Max is awake and alert

Max has been waking up more and has been more alert. Kelly said he is kicking his legs and moving his arms. When Kelly and John talk to him he moves his eyes toward their voices. This has been so encouraging to Kelly & John. He is still a little stiff but they are doing their exercises and stretches with him. As I said before, hopefully this is just due to being still and sedated for so long. The physical therapist will be back to evaluate him more tomorrow as well as observe Kelly & John doing his exercises with him.

Thank you so much for your prayers for peace and rest for Kelly & John. She sounds 100 times better today. Obviously still concerned and stressed but hopeful. She wanted me to especially thank the girls Bible class from Harding Academy. Yesterday was a tough day for her and the cards, notes, and Bible verses that she got from you were such an encouragement. That was exactly what she needed yesterday and she thanks you. Keep up the prayers girls!

Max's clotting studies came back good. They plan to run some thyroid tests tomorrow. They don't anticipate this being a problem but they want rule it out. So far all of the metabolic tests that they have run, including the one for homocystinuria, have come back good. They plan to have a metabolic doctor review the findings and make the call.

The neonatologist today, Dr Benton, feels that Max's blood sugar is stablizing. He said that he is really getting very little IV fluid. I think they plan to decrease it gradually to see how he does. It has remained in the 50's.

They plan to hear the CT results from the neurosurgeon either tonight or tomorrow.

They continue to monitor his phenobarb level and are keeping it in therapeutic range. Dr Benton said that he feels that Max will go home on phenobarb. He also said that when they go home they will have a monitor to watch his breathing and heart rate. I know that will ease their minds a little bit.

Dr Benton anticipates that they will be in NICU at least 3 weeks. If a shunt is needed then they will stay until Max has fully recovered from that surgery.

Prayers of Thanksgiving
~Max is alive
~Max hasn't had any seizures in a week
~All metabolic test results have been good
~Max's blood sugar appears to be stablizing
~Max's head circumferance has not grown today
~Max is waking up more and is more alert
~Kelly & John are feeling more peace as they deal with today and look to the future
~So many people are lifting Max, Kelly, & John up in prayer
~Bonding time for Kelly, John, and Max
~Compassionate doctors and nurses taking excellent care of the whole family

Prayer requests
~That the blood in Max's brain will dissolve and be absorbed as if it were never there, leaving healthy brain tissue
~That the thyroid tests tomorrow will go well
~That Kelly & John will continue to feel peace & comfort in God's presence
~That Max will not need a shunt
~That Max will remain seizure free and will be able to be weaned off of the phenobarb without complications
~If Max does need a shunt that the procedure will go well with no complications
~That Max's blood sugar will stablize and that the IV can be stopped for good
~That Kelly & John will have rest and that the rest that they get will be sufficient for them

We keep praying,
Karie

Morning update

I talked to Kelly a little while ago and she sounds better this morning. Yesterday the exhaustion was really setting in and the fear of the unknown was taking over. She was very overwhelmed. Thank you for your continued prayers for Max and for Kelly & John. Please continue to pray that they will feel peace that passes all understanding and that they will have strength and endurance to get through today. You have all been such an awesome support system through your cards, comments and notes of encouragement on the blog, and most importantly through your prayers. Please know that while Kelly and John cannot visit with you personally they feel your support and your prayers and will forever be grateful. Thank you for continuing to respect their need to not have visitors at this time. Max is staying awake more and they want to be with him as much as they possibly can. When they do leave the room they need to be getting food or rest. I know it is so hard to not visit because we all want to be doing something. Please believe me when I say, you are doing the most important thing any of us can do....you are bringing our precious Max before His Heavenly Father and we are placing him in God's hands. A dear friend, who went through a similar situation with her daughter, likened her experience to opening a present. However, instead of ripping the wrapping paper off, exposing the present quickly, her present was opened slowly and carefully, one tiny piece of paper at a time. Any time a piece of Max is revealed Kelly and John want to be the ones opening it and revealing it. In order to do this, they have to be with him. Also, they are needing rest. When in Max's room they are able to relax while holding their precious gift and bonding with him. The little energy that they have right now needs to be focused on each other and on Max. Again, please know that we are comforted so much at the thought of so very many people lifting Max, John, & Kelly up to God and we beg you to continue.

They took Max for his CT scan this morning and Kelly and John are hoping to meet with the doctors to discuss the findings early this afternoon.

Max's head circumferance has not changed today. They are not checking his bilirubin level today since it has been dropping. They will recheck it tomorrow.

Max was able to nurse off and on for about an hour today. He was still pretty sleepy but what an encouragement that he is getting his strength back. They are continuing his IV but have decreased the concentration of sugar in his IV fluid. His blood sugar has been holding steady in the 50's.

Max's legs and arms are a little stiff today. They have kept him in the fetal position while in his bed so hopefully now that he is waking and moving more he will loosen up. Kelly & John started doing some stretches and exercises with him today.

I'll update when we have the CT results and plan of care,

We keep praying,
Karie

Exhausting Day

Kelly sounded pretty down tonight when I talked to her. Like I said before they have good days and not so good days. It isn't that they got any bad news or anything today, but you know sometimes it just all hits you at once. I think today was one of those days for her. They met the 4th neonatologist today. To my knowledge it is the first interaction that they have had with him. In seeing 4 different neonatologist and now a neurosurgeon, they are hearing at least 5 different "theories" on what happened and what is causing Max's issues as well as at least 5 different prognoses for the future. To say the least, they are overwhelmed. Please pray for peace and clarity of mind as they listen and consult with all of the doctors. Also please pray for the doctors; that they are able to explain things in such a way that Kelly and John will fully understand. The doctor that they met with today talked about the possibility that Max will have cognitive delays as well. He said there is also a possibility that he will have none. I think this was disappointing. You know, just one more thing to think about. And now we have just one more thing to PRAY about!!! Our prayer is that Max will have minimal to no deficits period, physical or cognitive. While this is just another one of those bumps in the road, we are sooooo very thankful to have Max with us and we are so looking forward to getting to know him as he grows. Please pray that Max will just blow all of them out of the water when he comes back for his "I was in NICU for weeks but look at me now" parties.

I talked to my mom tonight and she said that Max has nursed well several times today. They are still supplementing with formula through his NG tube. Kelly said that they have increased his calories from 24cal/feeding to 26cal/feeding.

Prayers of Thanksgiving
~Max's life
~Kelly and John continue to have wonderful bonding time with Max
~Max's bilirubin levels continue to drop
~Max has nursed well and continues to tolerate and digest his feedings
~Doctors and Nurses taking wonderful care of Max, Kelly, & John
~Overwhelming support and prayers that Kelly, John, and the rest of the family are feeling from hundreds of people, many that we don't even know
~Max's physical therapist's evaluation went well

Prayer Requests
~That Max's CT will go well in the morning
~Max's blood sugar will stablize without the IV
~Rest and peace for Kelly and John
~Clarity of mind for Kelly and John as they hear so much information from several sources
~Patience and understanding from the doctors as Kelly and John process the information they are getting
~That if a shunt is needed, placement will go well without complications
~That the blood will dissolve and be absorbed SOON leaving healthy brain tissue

We keep praying,
Karie

Wait on the Lord

"Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. HE will not grow tired or weary, and HIS understanding no one can fathom. HE gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:28-31

I just talked to John. They have had another busy morning meeting with the doctor and bonding with Max. His blood sugar dropped again in the night and they had to turn his IV fluids back on. They met with the neurosurgeon this morning. John said he felt better after talking to him. He said that he feels that a shunt will be needed but it is not a huge procedure. He said it should only take 30 minutes and he does 200-300 a year. He said he has placed shunts in babies that are now playing football. He said that they will probably not do a tap to pull off fluid as this is primarily done in premature babies < 5 lbs because they cannot have a shunt.

John said Max's bilirubin is down even more today! It is down to 2. Thank you God.

Max's head circumferance is up another 1/2cm to 36cm today.

Max is going to have another CT scan tomorrow so they know more about what is going on in there. Please pray that this go well and we will hear positive and encouraging results.

We mainly need prayers right now about Max's blood sugar. The doctors are puzzled as to why it is so hard to maintain. They are testing for many different kinds of metabolic diseases. There are so many different kinds and they are all so rare. Please pray that they all come back normal and that his blood sugar stablizes.

Max's viral cultures came back negative.

We keep praying

Evening Update

Max's non-nutriative feeding went o.k. today. He still had a difficult time staying awake which i'm sure is partly due to the phenobarbitol in his system and partly due to the fact that he is a sleepy newborn. Kelly is still pretty nervous about feeding him because she was feeding him when he had his first seizure and turned purple. Please pray for peace with this for her. It will just take some time and some successful feedings to make her feel more at ease. For his 5pm feeding the nurse fed him 1/2 formula and 1/2 breast milk by bottle. He took about 15cc before he tired out. After the feeding at 2pm he slept on Kelly's chest for a couple of hours. I know she is loving that time. That is a precious time for any parent of a newborn but even more precious for them.

Max's blood sugar has remained stable in the 50's since being taken off of the IV. Please pray that it doesn't drop below 45 as this will mean that they have to turn the IV fluid back on.

Max hasn't had any seizure activity since in 6 days. Praise God. They are thinking that the seizures were due to the stress that his body was in and not a problem that he will have to deal with long term.

We don't know any lab results yet but I will update tomorrow when we know them.

My mom is heading back to Arkansas tomorrow. I want to say a special thank you to all of those at Friendship Christian School that have encouraged her to go and have almost literally pushed her out the door. It is going to make her feel so much better to know that she is there if Kelly needs anything, a hug, a shoulder, a smile, a massage, etc. All those things my Mom is so good at. I'm sure she will gladly volunteer to sit with her precious grandson so his mommy and daddy can get a nap!! I especially want to thank Veronica. You are such a blessing to our life and we are so thankful that Mom has the opportunity to work with you. We love you.

We keep praying,
Karie

Thank You To Maverick Trucking

I want to send a very special thank you to Maverick Trucking, where John works. They received a card from you today as well as a deposit slip for money you put into Max's account. They were so overwhelmed by your generosity and support. In a time like this it is such an encouragement to know that you have your co-workers behind you. Thank you for giving John what he needs. You have been so gracious in the time that you have allowed him to take off to be with his family. Thank you to any of you that have taken up the slack where he left off when Max was born. This will lighten his load. Thank you, in advance, for being understanding when John returns to work, knowing that all of his energy is going to need to be focused on getting his work done so that he can return to Kelly and Max. We are so thankful that John works with such a kind and considerate group of people who most importantly are bringing his precious son before our Heavenly Father.

We keep praying,
Karie

Finding comfort in God's time

I talked to Kelly a little while ago. She sounds much better today after getting some encouraging news. She said that every day is so different, up and down. They just don't know what to expect when looking at tomorrow. She has been reading a book that Kristin (Max's other aunt) gave her and she is learning about finding comfort in expecting things to happen in God's time, not our time.

Max opened his eyes today for the first time since Thursday afternoon. This was such an encouragement to Kelly and John and I'm so thankful that they were there to witness it. She said he looked around for a couple of minutes!

The physical therapist evaluated Max today. She didn't see anything she was too concerned about. She said that he did have low muscle tone but that could be from the sedation he has received. She will continue to evaluate him 2-3 times a week and gave Kelly and John some stretches and exercises that they can do with him. She is also going to put them in touch with Easter Seals for follow up after leaving the hospital.

Today the doctor said that while the blood is still present it is very unlikely that the Grade 3 bleed on the left side of his brain will worsen to a Grade 4 and that the Grade 4 bleed will progress into the cognitive area of his brain on the right side. While we were hoping that the blood would have disappeared this is a huge answered prayer, God's time. With Max being a newborn the left side of his brain can develop new pathways to compensate for the deficits, if he has any, from his right side. For this we are thankful.

Max's temperature is holding steady at 98-99. He is still on IV antibiotics and we haven't gotten the results of the viral culture yet.

The neonatologist and the neurosurgeon are supposed to meet to review Max's ultrasounds today or tomorrow. The neonatologist said that if intervention is needed that they will do a tap to remove fluid before doing a shunt. This would be less invasive than a shunt.

They are continuing to do more testing to look for answers. They will be doing some clotting studies and some protein tests. Please pray that all of these come back normal. I will let you know when we know results. Also they sent off a specific test for the homocystinuria today to hopefully rule that out completely.

Kelly said that today was the 1st time that food has tasted good to her in a week. Please continue to pray for peace for her and John and for rest. They are in Mommy and Daddy mode and are so focused on their precious baby boy that they aren't finding time or energy to focus on themselves.

At 2pm today they were going to let Kelly give Max a non-nutriative feeding. She was to pump at 1:30 and then let him "nurse" at 2pm. Instead of getting milk from her he would be getting formula through a small tube in his mouth. What a blessing that the doctors and nurses see this need that she has as his mommy. This serves as bonding time for them while still being able to control the calories that Max is getting from the formula. They will gradually reintroduce breastmilk at some point.

Prayers of Thanksgiving
~Max's bilirubin levels have dropped from 5.2 yesterday to 3.2 today, this is significant and we give God the glory. The doctor feels that it will work itself out
~Max's blood sugar remains stable and they have turned off the IV
~Time for non-nutriative feeding for Max and Kelly
~Compassionate doctors and nurses
~Max opened his eyes and Kelly & John were present for it
~Max's bleeding has not gotten worse
~Physical therapist evaluation went well

Specific Prayer Requests
~All of Max's lab results (clotting studies, protein tests, metabolic tests) will come back normal
~Meeting with neonatologist and neurosurgeon goes well
~That there is not a need to intervene right now with surgery
~That Max's head circumferance growth is not due to a problem with his brain
~That the non-nutriative feedings will go well and that Max will tolerate the gradual reintroduction of breast milk
~That the blood on Max's brain will dissolve and absorb and will no longer be an issue
~That Max has suffered no brain damage and will have minimal to no deficits

Thank you for continually lifing up Max, Kelly, & John in prayer. Also thank you for forwarding this to all the prayer warriors you know. Thank you to Matt at Family Life Ministries for calling and letting me know that 300 people that we don't even know are praying for Max. We continue to pray for strength, peace, and complete healing.

We keep praying,
Karie

Bilirubin levels are dropping

I just talked to Kelly. She said that they have gotten some more encouraging news today. They have had a busy morning meeting the with the doctor and physical therapist. So far I know that Max's conjugated bilirubin levels are dropping. The doctor feels that is fixing itself. Praise God. They met with the physical therapist this morning. I don't know all of the details of her evaluation but I do know that she gave Kelly and John some exercises and stretches that they can do with Max. As far as I know the doctor doesn't see a need for a shunt at this time. They did go on and consult a neurosurgeon at Kelly and John's request. He is supposed to meet with them today or tomorrow.

I will let you know when I have more details. Right now we need to thank God for the dropping bilirubin levels and continue to pray that his liver is not damaged and that that issue will totally and completely work itself out.

Thank you so much for your continued prayers and concern. Your comments and e-mails are such an encouragement to Kelly and John and the rest of our family. We are confident that God is working overtime on our precious Max.

We keep praying,
Karie

Ultrasound Results

The ultrasound today showed that Max still has a grade 3 bleed on the left side of his brain and a grade 4 on the right side. While we were hoping to hear that the bleeding had completely resolved but we are thankful that it has not gotten worse. The ventricles did appear to be a little larger and today Max's head circumferance was 1/2 cm larger. They said that the increase in head circumferance could be from the IV fluid but we want to make sure. The doctor is going to compare the ultrasound from Thursday and the one from this morning tomorrow morning. At that point he will decide if he needs to consult a neurosurgeon for a possible shunt.

Today they were able to take Max off of the bili-blanket light. They moved a recliner into the room and John and Kelly were able to hold him on their chest. Kelly was even able to take a nap with him sleeping on her chest. What a blessing. This is so much better for all three of them to be able to bond in such a way. Especially after not being able to hold him since Saturday afternoon.

The doctors and nurses are puzzled with what is going on with Max. We must keep our trust and faith in God and know that He alone is in control. Please pray that he will give the doctors wisdom and knowledge and clarity of mind as they search for answers. Also please pray for Kelly and John and the rest of the family as we wait for answers. It is soooooo hard to wait. We want answers now and we want to know that our precious Max is going to be perfectly healthy.

Please continue to pray that Kelly and John and the rest of the family will have peace and comfort. It is so hard to be faced with something like this any time but especially if was not expected. Kelly had the perfect pregnancy. She did everything right. She is going to be such a wonderful Mommy and Max is so blessed to have her and John as his parents.

Prayers of Thanksgiving
~Kelly and John have been able to hold Max through out the day
~The bleeding on Max's brain hasn't gotten any worse
~Max's eyes appeared normal to the eye doctor today
~Max had a restful day today
~Kelly and John slept all night last night
~Compassionate doctors and nurses that are communicating well with Kelly and John
~The grade 4 bleed occurred on the right side of Max's brain (a majority of people are dominated by the left side of their brain)

Prayer Requests
~The blood on Max's brain will dissolve and dissappear as if it were never there
~That Max will have completely healthy brain tissue
~Kelly and John will remain strong, that they will have peace and understanding
~That all of the issues Max is having will be resolved and that he will live a long, happy, and healthy life
~That the doctors will have wisdom and clarity of mind in figuring out what is going on
~That no liver damage has been done
~That Max's conjugated bilirubin will fall to a normal level of <1 (today it was 5.2 up from 5.1 yesterday)
~That the evaluation from the physical therapist will go well tomorrow and that his follow up visits will go well
~That Max will suffer minimal to no long term effects from the bleeding
~That whatever is causing Max's issues is not genetic and will be easy to treat
~That Max's blood sugar will remain stable and that he will be able to process the sugars in Kelly's milk if possible

A dear friend told us about dealing with a situation after her daughter was in a serious car accident in the 3rd grade. She said that they prayed to get through it 24 hours at a time. Right now it is so hard for us to not look to the future and long to see what it holds for Max. That is not possible. All we know is that we have today and we must pray to get through today and Max's future is in God's hands. If we look to the future it is completely overwhelming, it is out of our control. Thank you for your continued support and prayers. Please continue to forward this to all you know who will pray for our Max.

We keep praying,
Karie

Max's eyes look great

Just talked to Kelly, the eye doctor said that Max's eyes look great. Praise God. The ultrasound report is back but Max's doctor hasn't been in to hear it and explain it to them yet.

We keep praying,
Karie

Small Chance

Hey. I just talked with John again. He said that they just talked with the doctor again and he told them that he thinks it is a very small chance that homocystinuria is the cause of Max's problems. He said normally he wouldn't even tell the parents what he was testing for but he recognizes Kelly and John as educated people and he knows that they want to know everything that is going on with their precious son. He said that in the 20 years that he has been practicing he has tested hundreds of babies for this and has maybe seen 2 or 3 with the disease. John said that they felt better after talking with the doctor this time. He also said that if the lenses are not displaced it doesn't mean that homocystinuria will be completely ruled out. It will still be something that they investigate.

We keep praying,
Karie

Prayers

I just talked with John. He said when the doctor came by this morning that he talked about a metabolic disease that he wants to rule out. It is called homocystinuria. He told them that it is not a good diagnosis and that it is difficult to treat. It is primarily treated with diet. Apparently this diagnosis would explain a lot of the things going on with Max. One thing that is common with homocystinuria is that the lenses of the eyes are displaced. They have an eye specialist coming in an hour to check Max's lenses. Please pray hard that Max's lenses will be just as they should be and they will not be displaced. The doctor is going to consult with some physicians at Arkansas Children's Hospital to see if we can get any answers quicker through them.

The doctor did say that sometimes problems like what Max is going through just fix themselves and we never know what the root cause was. Please pray that this will happen in Max's case and that all of his tests will come back normal.

John said they did the ultrasound around 7:00am this morning and we should have results by lunch time.

Prayers of Thanksgiving
~Max's blood sugar and temperature held steady last night
~Kelly and John were able to get some rest last night

Prayer Requests
~That Max's hurdles are not being caused by homocystinuria
~That the lenses in Max's eyes will be exactly where they should be and look perfectly normal
~That the ultrasound results will be encouraging and will show no sign of damage as if the hemorrhage was never there.
~That everything Max is going through will totally fix itself and his lab results will all come back normal.
~That Kelly and John will have peace and understanding as the doctor investigates possible causes and looks for answers
~That we will get answers quickly and the cause, if there is one, will be easy to treat

We keep praying,
Karie

Max's Tanning Bed Glasses!

August 27 Evening Update

I talked to Kelly a little while ago. She said that Max's IV came out and they decided to put in a central line into his cord in his belly button. This vein will be able to better tolerate the amount of fluid and the concentration of fluid that Max is receiving. They have decided to try Max on formula only. The doctor is wondering if Max is unable to break down the sugars in Kelly's milk possibly due to some type of lactose intolerance. Breast milk can also be a cause of jaundice (I am unsure why). So while Kelly was really hoping and planning to nurse Max, this would be an extremely easy way to fix the high bilirubin levels and unstable blood sugar without any lasting effects. Please pray that his conjugated bilirubin level will start decreasing. It is supposed to be <1 and his last level was 5.1.

She also said that they have put Max on a bili-blanket. This means that he doesn't have to wear his tanning bed glasses for now. His eyes have been so swollen and puffy from the IV fluids so he hasn't been able to open them. They are now giving him some lasix to remove some of the fluid so hopefully Kelly and John will be able to look into their son's eyes soon.

Max's temp is holding steady at 99.1. His last blood sugar was the highest it has been - 86.

The ultrasound is tomorrow. I assume that they have it scheduled for the morning but it could get bumped if there is an emergency. They said it will take a couple of hours to get the results back once it is done. Please wake up praying in the morning. Pray that when they do the ultrasound they will see so sign that there was ever any bleeding. That the blood will have clotted as it should and that it will have completely dissolved. Also pray that they only see healthy brain tissue. Please pray for wisdom and clarity of mind for the person doing the ultrasound and for the doctor that interprets it. I will let you know the results as soon as I find them out.

My parents saw a rainbow today while driving. "Thank You God for reminding us that You are in control and You have not left us alone. Please give us peace."



We keep praying,
Karie

Bumps in the road

Kelly and John met with Dr Sotomora this morning. He told them that the type of jaundice that Max has is not the newborn kind of jaundice. He said his bilirubin is high in processed and conjugated form which usually means disfunction of the liver. He said it can be caused by several different things. He said that we hoped the cause was liver injury which can be treated with steroids or a viral infection. We just got the news that his liver function test all came back normal. They plan to run tests over the next 24 hours to rule things out – blood tests and metabolic tests. He said that the jaundice and unstable blood sugar could be related.

Max’s blood sugar dropped to 28 so they had to start another IV. They had to put it in his head because all of his other veins have been used so much. His sugar has come up to 78. The last test was 60. They have also started giving some high calorie formula with his feedings. He is still digesting his food well.

Due to Max’s low blood sugar he cannot be overstimulated right now. Kelly and John will not be able to hold him or touch him until blood sugar is more stable

Max has a little bit of a fever today, 100.1. The doctor said that sometimes they get a little too warm in the incubator. They now have put him back in the open warming bed.

Prayers of Thanksgiving
~Max’s platelet count has increased to 142,000
~Max is digesting his food well, he is now getting 45cc (1.5 ounces) through his NG tube (in his nose)
~With IV fluid his blood sugar went to 78
~Max’s bilirubin level has dropped to 10.4
~Max’s liver function tests were all normal
~Max’s head circumference is the same
~Max has gained a little weight – he is up to 6lbs 3oz
~Max has been resting well
~After moving to the open bed his temp is down to 99.1

Prayer Requests
~That Max’s blood sugar will stabilize and they will be able to stop his IV fluid
~That the jaundice and high bilirubin are being caused by a minor viral infection or liver injury that can be easily treated
~That Max’s bilirubin level will continue to drop and will get into a normal level
~For rest and peace for Kelly and John
~Please continue to pray for the ultrasound tomorrow that it will show that the bleeding has resolved completely and that there are no signs that the blood was ever there. That they will only see healthy brain tissue
~That Max will have no seizure activity as they decrease his phenobarbitol
~That Max will be able to be taken completely off of the phenobarbitol

As you can imagine, Kelly and John are disappointed with Max’s unstable blood sugar and now the questions about the cause of his jaundice. We are on a constant rollercoaster ride and it is getting tiring for all of us. Please pray that all of these little things will clear up and be healed completely.

We keep praying,
Karie

Prayers and Thanks

Tonight they took Max's IV out so he is for now only getting calories from milk given through his OG tube. An hour after they took his IV out his blood sugar went from the low 80's to 44. This was of course disappointing to Kelly and John. Instead of reinserting his IV they increased the amount of milk that he is getting. Shortly after increasing his feeding it was up to 46. They want it to stay above 45. If it drops below 45, it is my understanding, they will have to restart his IV. Bless his heart, his little hands and feet look like pin cushions and his eyes are so puffy from the IV fluid. They stressed the importance of keeping Max calm, any time he gets agitated or overstimulated he is burning useless calories. He needs to keep those calories to stablize his blood sugar and put on some weight. He gained 30 grams today. Kelly and John are so focused on Max and want to do what is best for him. They are not going to hold him tonight so he can rest. Max was still pretty tired when they tried to nurse him at the 4:00 feeding. He latched on and swallowed a few times but quickly tired out.

Please print if you are able and carry the following lists with you throughout your day...

Prayers of Thanksgiving
~Max's head circumferance has not changed since admission to the hospital
~Max's fontanels (soft spots) have not grown
~Max is doing well with the tube feeding
~Kelly and John have been able to rest a little
~They were able to take his IV out
~Appears to have good clotting abilities
~EEG results were good, showed that seizures were most likely caused from stress, not something that will cause an ongoing problem
~Blood sugar hasn't fallen below 40
~He has been taken off of his antibiotics, his blood cultures showed no sign of infection
~Max's seizure medicine (phenobarbitol) has been decreased
~Max is digesting all of his tube feeding. They have increased his feedings to 30cc
~The doctor that evaluated Max today said that everything looks good from the outside. He said he has normal movements and actions, nothing appears out of the ordinary which is good since the part of his brain with the bleeding would effect his physical movements

Specific Prayer Requests
~Pray that we will receive good news after the ultrasound on Monday. That they will see no sign of bleeding or swelling, and that the blood clots have disappeared leaving normal brain tissue. (best case scenario)
~Max's platelet count is low - 129,000, Pray that it rises to a normal range (150,000-250,000)
~Babies usually bleed the 1st 7-10 days of life. Please pray that no more bleeding occurs. Max will be 10 days old on Friday, September 1
~Pray that when the physical therapist evaluates Max next week that they will see no need for therapy
~That Max's blood sugar will stablize and he will not have to have another IV started
~That Max will experience no seizures
~That he will be able to nurse soon and that he will tolerate his tube feedings
~For Dr Nestrud, Dr Sotomora, Dr Benton, & Dr Zuerlein and for all of the nurses caring for Max
~For continued peace and rest for Kelly and John. Please pray that the rest that they get will be sufficient for them and that they will feel well rested when they wake up.


As you can imagine all of Kelly's and John's energy is being spent on each other and on Max. Several people have mentioned visiting the hospital. They are still not up for visitors and may not be for a while. They are feeling your love and support by the comments that you are leaving and by the prayers you are lifting up to God on their behalf. Thank you so very much for respecting this need that they have right now to focus on their family.

We keep praying,
Karie

Address for Cards

Max is doing well today. He was still a little too sleepy to nurse this morning. Kelly was going to try to nurse him again at 4:00 and I haven’t heard how he did. They decreased his phenobarbitol by half and he is now taking it through his OG tube (tube down his throat) instead of through his IV. They are also giving him breast milk through the tube. They will evaluate how he does and if he tolerates what they are giving him, they will increase the amount he is getting.

Now that Kelly and John have processed what the doctor told them this morning. They have some questions. They are wanting to know what he sees specifically in his evaluation of Max that indicates to him that there has been minimal to no damage. Please say a prayer that they will get some clarification and answers tonight. All of the doctors and nurses have been so gracious in communicating with them so I’m sure it won’t be a problem.

I have added an address to the right where cards can be sent to John, Kelly, and Max
Baby Max Julian ~ BHMC-LR NICU ~ 9601 Interstate 630, Exit 7 ~ Little Rock, AR 72205

I want to say a special “Thank You” to Kelly & John’s class at church. I first of all want to thank you for the prayer meeting that you had in honor of them and Max last night. It brought tears to my eyes when I read that there was a perfect rainbow in the sky when you left. What a reminder of God’s promise! It wasn’t even raining! You have also seen the need and taken care of the hotel room for Kelly and John so that they can stay close to Max and have their own space. It has been such a blessing to them and they are so thankful to have that burden lifted. If anyone is interested in helping with that please notify Becky Harris at Sylvan Hills church of Christ.

I also want to thank you all for the e-mails that you have sent me. I am hoping that Kelly and John will be able to read all of them at some point today. I am sorry that I haven’t been able to reply to each of you but please know that I have read them and appreciate each word.

More information when I have it,

We keep praying,
Karie

Our God Is an Awesome God

We just got a call from Kelly. They just met with the doctor that they had met with on Thursday morning. After evaluating Max this morning, he told Kelly and John that he believes there is little to no damage from the bleeding. As you can imagine we are filled with hope, encouragement, and thanks. We want our prayer warriors to continue now and pray even harder. Beg God that when they do the ultrasound on Monday that the blood will have clotted as it should have. Pray that all of the blood will have disappeared from the ventricles and brain tissue like it was never there leaving healthy brain tissue. As of now they have done no type of definitive test to tell us that there is no damage we are only going on the doctors evaluation and his years of experience. We feel that he would not tell us this if he was not fairly confident. Kelly couldn't talk long so we don't know much about the rest of their conversation. We do know that they are going to start weaning him off of his phenobarbitol and she is supposed to try to nurse at 10:00am. I assume that if he is not yet strong enough to nurse they will put a tube down his throat and feed him some breastmilk through that.

Specific Prayer request (please print if you are able and keep them with you)
~that the ultrasound on Monday will show that the blood has clotted as it should
~that the blood has disappeared from the ventricles and brain tissue, leaving the brain tissue like the blood was never there
~that as they wean him from the phenobarbitol he will experience no seizure activity or stress
~that he will do well nursing and that it won't be too stressful for him
~that Kelly and John will have peace and rest


I will update more when I have more information. We can never put into words what we feel for you who have brought our precious angel before our Heavenly Father. We are confident that God is working overtime on little Max. As someone reminded us in a comment, He is the Great Physician after all!

A special thank you to Northside Elementary. You all mean so much to Kelly and we thank you for your acts of kindness. You went above and beyond with the items and money that you have collected. Thank you so, so much for your overwhelming support.

We keep praying,
Karie

Today was a good day

I want to start off this entry with a huge "Thank You." Kelly and John had an opportunity today to read all of your comments and they were so very touched and moved by each and every word, prayer, and verse that you have shared with them. Each comment was such a great encouragement. Please keep them coming! My plan is to print each of them and put them in a prayer book for them to cherish for years to come.

Max had another restful and peaceful day today. The doctor was encouraging. I will post another list of things we are thankful for and prayer requests in the morning. One thing that was an encouragement to me was the sound of Max's cry. When we saw him for the first time Wednesday night after he was transferred his cry was shrill and high pitched. Today I heard him cry when they were drawing his blood and I was amazed at the difference. His cry sounded so much stronger and like a healthy newborn. Tonight they moved Max from his big open warming bed to a smaller enclosed isolette. While the isolette makes Max look more serious, the nurses assured us that this is a positive move.

I am going to post some pictures so check the family album to the right.

We keep praying,
Karie

Fund for Max

So many of you have been asking "What can I do???" Primarily we want you to do what you have been doing....PRAY!!! However, we now have another way that you can help. As most of you know, if you have had any family member in the hospital, the bills add up quickly. A perfectly healthy newborn costs approximately $10,000. As you can imagine, as a nurse light-heartedly told Kelly yesterday, Max is our MillionDollar Baby!!! And believe you me, he is worth every penny! The extent of the financial stress is not yet known. What we do know is that Max has already ridden in a helicopter and he will be camped out in the Neonatal Intensive Care Unit for at least two weeks. His hospital bill alone is likely to be in the hundreds of thousands of dollars, not to mention the cost of his ongoing care at home and the incidental expenses they are incurring right now. The thought of this prompted us to set up a bank account in Max's behalf.

~If you would like to donate to Max's account you can go to any REGIONS Bank. Tell them that the account is based in Arkansas and is a custodial account in the name of Max Stewart Julian.
~You can also send a check made out to Max Stewart Julian to
Regions Bank~106 South 2nd Street~Cabot, AR 72023~Attention: Helen Clark

Please feel free to pass this information on. As you can imagine Kelly and John are not even concerned with finances right now, they are focusing on their blessings and providing Max the care he needs. Thank you for feeling the need to help this precious family through this scary time.

We keep praying,
Karie

Things we are thankful for and Specific prayer requests

God is good and I want to start off this entry by giving you things to thank Him for.
~Max's life
~Max is resting well and looks content
~There is no swelling on the brain right now
~John and Kelly are felt very peaceful last night (It was so wonderful for them to stay in the hotel. The parent sleep room had only one twin bed. They slept comfortably last night)
~The doctor feels optimistic
~There is a possibility that he could be fine
~The doctors and nurses have been taking great care of Max and have been so gracious in communicating with Kelly and John and our family
~There has been NO seizure activity in over 24 hours
~That the last 3 blood sugar checks have been 71, 69, and 74 (they feel that his unstable blood sugar in his first 2 days of life was due to the stress that he was under so this indicates that his body is resting and is not stressed, PRAISE GOD!!!)


After talking with the nurse last night Kelly and John have some specific prayer requests that they are asking you to bring before our Father. If you are able, please print them and keep them with you...
~That the bleeding on the left side of Max's brain will decrease from a grade 3 and that the bleeding on the right side of the brain will decrease from a grade 4
~That there will continue to be no swelling in the brain
~That there will be no seizure activity
~That the ultrasound of his brain that they do on the 28th will look as good or better than his baseline ultrasound
~That his blood sugar stays above 60 and never drops below 40. (if below 40 he has to stay on the higher concentration of iv fluid
~That he will be able to start eating and be off of the IV
~That he will be able to nurse well, Kelly has been able to pump and her milk came in last night
~That his jaundice will get better (they had to put a lamp on him last night)
~That he will not loose anymore weight. He has lost 4 oz and is down to 6lbs. This is great for a newborn but we need him to have his strength
~For continued strength and wisdom for all of the doctors, nurses, and therapist that are blessed to know Max and take care of him
~That Kelly and John will continue to have strength and peace and be able to make the best decisions for Max. (Let me interject here - it has been so precious to watch Kelly and John together. They are getting so much strength from each other. It is so precious to see the love and support that they are giving to their beautiful son and to each other. Please pray that in their stress they will continue to depend on God and on each other as they have to this point)
~That Max will continue to be peaceful and comfortable
~That there is no brain damage

Kelly and John asked me to let you know that they are so very grateful to each of you for all of your thoughts, prayers, comments, and concern for them and for Max. They can feel God working and last night felt peace that could only come from Him. Thank you for forwarding this site to all you know that can pray for all of us and for putting us on every prayer list.

Please keep praying,
karie

Contact number

Kelly asked me to put my cell phone number on here as a contact if the need arises. As you can imagine in time like this Kelly and John are so overwhelmed and exhausted, physically, mentally, and emotionally. They are still not ready for visitors and direct phone calls. When they have the energy they will be able to communicate with you more. Right now we are focused on them and what they need. That is why the comments on the blog are so special to them because they know that while they cannot communicate with you, you are communicating with our Father on their behalf. I know that they will cherish those for years to come. We as a family are also physically, mentally, and emotionally drained and exhausted. Everyone has been so wonderful. People have offered their homes for us to use and many other services for which we are all grateful. If you need to communicate with the family outside of commenting on the blog please e-mail me at kagreenrn2@earthlink.net. put max in the title in case I don't recognize your address. Also if the need arises my cell phone number is 901-201-0797. Please leave a message if I am unable to answer.

Thanks,
karie

Restful Day for Max

Today was a restful day for Max. The kept him on the phenobarbitol so he would not have any seizures and so that he would be able to rest. Kelly and John were able to be with him a greater part of the day. The doctors and nurses have been so great in their communicating with Kelly and John and the rest of our family. They have been honest but they have also been encouraging. They have not made any promises or given us any indication of what type of long term effects we are looking at, simply because they do not know. The newborn brain is so immature and so resilient. There is a physical therapist coming tomorrow morning to evaluate Max and determine if Kelly and John should start some exercises with him. Early intervention is the key to a precious child like Max reaching their full potential. Before the newborn brain gets mature and set in it's ways it can be taught to develop other pathways to compensate for deficits. This morning apparently the doctor made a mistake when he said that one side had a grade 2 bleed. It is actually a grade 3. It is not that it got worse through out the day, He simply misspoke. The main prayer request for Max that we have at this moment is for this to not increase to a Grade 4 as the other side has. The doctor feels that it has stablilized and he does not anticipate the increase however, he cannot make any promises. He told John and Kelly tonight that he is "cautiously optimistic." My husband spoke with Kelly's OB doctor tonight and he said according to some blood work that was done immediately after delivery that it did not appear that Max had gone without oxygen. This to me is a very good sign.

Max is going to be such a special child and he already has so many people who love him and can't wait to meet him. We so greatly appreciate the comments, thoughts, and prayers that you have left. I read them to Kelly tonight and she was so thankful to each of you for your encouragement, love, and constant prayer.

Kelly and John were unable to stay in the parent sleep room tonight. However, thanks to some good friends who had connections they were able to get a room at the Baptist Hotel just across the parking lot. A special thank you to some very special friends who have seen a need and lifted the burden of the financial strain of staying in the hotel. I know that Kelly and John thank God everytime they think of you, as do we. Please pray for the family that got their parent sleep room because their baby must be more unstable than our sweet Max.

More tomorrow, please keep praying.
karie

An exerpt from Kelly's Journal and specific prayer requests

Kelly was looking through her journal that she kept during her pregnancy tonight. She wanted me to share with you her first entry from the day they found out they were pregnant with Max.

~December 26, 2005~
I've been praying for you for a very long time. I've been asking God to give you to us for 7 months. I've been praying that He would bless us with a child at the perfect time. It took 7 months of hoping and praying for you to be conceived so I know that God was waiting for the perfect time to send YOU to us. I can't wait to meet you. I've started a prayer book today. When I opened to the 1st page I saw the following verse at the top. 'I say to you, Ask and it will be given to you, seek and you will find, knock and it will be opened to you,' Luke 11:9. I have been asking for you and the Lord has made it his will to give you to us.
Other verses I like:
I Samuel 1:27 - I prayed for this child and the Lord has granted me what I asked of Him.
Jeremiah 29:11 - For I know the plans I have for you declares the Lord, plans to prosper you
and not to harm you, plans to give you hope and a future
I am praying for you and thinking of you constantly.
I love you so much already,
Mom

Isn't it amazing to see how God was preparing Kelly's heart many months ago to cherish the precious gift that she has been given. And she feels that those verses are still very applicable and important to her today, probably even more than they were the day that she wrote them in her journal. She asked me to put them at the top of the blog so that everyone would read them when they open the site.

Specific prayer requests from Kelly
*Please pray that the Grade 3 bleed on the left side of the brain will not progress to a Grade 4
*Please pray that the bleeding in the ventricles will resolve itself and that Max will not have to
have surgery to place a shunt to drain the blood

Visit with doctor

I just talked with my dad. Kelly & John and the grandparents just finished meeting with the doctor. The CT scan showed that Max has a grade 4 bleed on one side of his brain and a grade 2 on the other side. He said that a grade 4 bleed is ususally associated with cerebral palsy. He said that it can be very mild where he will possibly just need some therapy and it can be very serious. It can go from one extreme to the other. He advised us to not search the internet for grade 4 brain bleeds. He said that we will find the worst case scenario situations online and those are typically not present in term infants. He said that Max should be there for at least 2 weeks. During this time Kelly & John have unlimited access to him. He encouraged them to sit with him, hold him, and reassure him that everything is going to be o.k. Kelly requested that we bring him some books so she can read to him. The doctor said that there are no signs of active bleeding or additional swelling at this time which is a good sign. He also said there appears to be no need to place a shunt at this time. Please pray for signs that are reassuring to the doctor that the effects of this are minimal. He speculates that during labor the cord being around Max's neck decreased the drainage of blood from his brain, it does not appear at this time to have cut off blood going to his brain. As a special ed teacher I know that Kelly is living her worst nightmare. Please, please pray for peace for both her and John. Please pray that Max will suffer no deficits. Please pray that if he does have any deficits that they are minimal. Hopefully Kelly will be able to nurse him by the weekend. Until then he will be receiving most of his nutrition through his I.V.

Please keep praying,
Karie

Update

My mom just called. They just got some results back from the CT scan. It did show bleeding on both sides of Max's brain. They said this was possibly caused by his cord being around his neck at delivery. They may have to put in a shunt. They are waiting to hear more from the doctor in a few minutes.

Specific Prayer Requests

This morning Kelly and John called with some specific prayer requests:
*Please pray for the doctors and nurses that are caring for Max. Please pray that they will
have wisdom and knowledge to quickly treat his needs.
*Please pray that they will quickly discover exactly what is causing Max's seizures and unstable
blood sugar and that it will be easily treated
*Please pray that Max has incurred no permanent damage
*Please pray that Kelly and John will have peace and understanding that can only come from
our Heavenly Father at a time like this
*Most importantly please pray for our little Max. Please pray for his brain. Please pray for
strength and endurance and rest for his body. Please pray for complete healing.

Please e-mail this site to anyone you know that will bring our precious son, grandson, great-grandson, and nephew before our awesome Heavenly Father.

Thanks
Karie

Prayers for Max

We welcomed Max with open arms at 11:14am on Tuesday August 22, 2006. He weighed 6lbs 4oz and was 19.5 inches long. Max and Kelly did great after his birth. His apgars were 8 & 9 and he nursed well soon after he was born. At some point Tuesday afternoon they checked his blood sugar and it was low. At this point they put an i.v. in and supplemented a little bit with some formula. This is not an extremely uncommon occurance a few hours after birth. Max did well Tuesday night. He spent most of the night in the nursery so they could closely monitor his blood sugar. Once they got a room available Kelly was moved closer to the nursery so Max could be in the room more. His sugar somewhat stablized Wednesday and they were able to start decreasing his I.V. fluid. Last night (Wednesday) around 8:00 Max nursed really well. Kelly burped him and started to nurse him again. We noticed that Max was turning purple. For a split second we thought he was straining for a bowel movement. When his condition didn't change in a couple of seconds and he didn't appear to be breathing, we called for help. In a few seconds we had 6 or 7 nurses in the room with us. The first nurse to respond listened to his heart and lungs. She said he had a good heart beat and was breathing. They rushed him to the nursery to monitor him closely. Kelly and John followed. They allowed the grandparents in to see Max and hug Kelly and John. Max had stablized and Kelly and John returned to their room to try to get some rest around 10:20pm. About 30-45 minutes passed and Max had another spell. It was at this point that the pediatrician decided to transfer him by helecoptor to the bigger Baptist hospital in Little Rock where he could have a higher level of care. We were waiting in the waiting room while Kelly and John were getting rest. When we heard the helecoptor my mom and I immediately got a sick feeling. Without saying anything to each other I think we both started praying "Lord please don't let that be for our Max" Before we left Springhill Baptist they told us that they thought he was having seizure like activity. He had another couple of spells or seizures before leaving for the big hospital. Once they got him to the NICU they started him on some phenobarbitol to stop the seizures. Luckily they had a parent sleep room and Kelly and John were able to stay there last night. We (the 2 sets of grandparents and myself) stayed until around 2am. We were allowed in to see Max. They are unsure now what is causing the seizures and the unstable blood sugar. One of the things they are investigating is a subarachnoid hemorrhage. He had a CT scan this morning at 6:45 and last time I talked to John they were doing an EEG to make sure the electrical activity in his brain is normal. I will try to update this site when we have information. If you post comments I will print them out and take them to Kelly and John at the hospital.

Thank you for your prayers for this precious family.
Karie (Kelly's sister)