More of Madalynn and Siblings

We are having so much fun here at Kevin's. We expect Madalynn and her mommy to arrive home today in a couple of hours. Meanwhile here are some more pictures:







Matthew talked on the phone to his dad at the hospital. Then he decided to use the wet washcloth that I had to wash his face for a phone. He was so funny, babbling away with the wet washcloth on his ear.



Grandpa Starr arrives with the tractor in the dump trailer after dark. Matthew had to get in and drive the tractor. He was one happy boy. Today he has been running from window to window to watch grandpa as he drives the tractor. And right now, he is sitting on the tractor again.

Madalynn is born

Madalynn was born this morning. We brought Allison & Matthew to see her. She is about 4 hours old in these pictures and still had not had her first bath. She reminds me of Kevin--she is going to be a cutie! Allison wanted to bring the little dress that matches hers to show to baby sister. She is a good baby and was 7 lbs 7 oz, 20" long. OK these pictures make we want to head back to the hospital to cuddle her. Her grandma Mansfield is her nurse for the day. So fun!!

Check Julie's Blog

Be sure to click on Julie and Ryan Persson's blog on the right column. She has just updated her blog with total history of Michael and some really cute pictures.

Two Cousins

On Sunday we got together for Blake's Birthday. This is the first time that Ellie and Bryson have been together for awhile. Remember Blake only weighed 6 lbs when born, and he is 2 months younger than Ellie. (Blake is Tami's and Ellie is Stephanie's--although you could probably tell that since they look like their Fathers!)

Michael at 2 Months

Look how chubby his little cheeks are getting. We see smiles now. He is so cute!





Look how chubby his little cheeks are getting. We see smiles now. He is so cute!

Last Michael Update

Michael is doing great! Since he has been home it is like having a normal baby. He does spit up some when burping, but loves being able to drink from a bottle. Today he went on a trip to his aunt Tami's house. On Wednesday he weighed 8 lbs 6 oz - he was just 8lbs on Sunday. Still small, but making gains.

Again, a thank-you for many prayers for Michael. We feel it was the result of prayers and blessings that he is alive and doing very well.

Best Monday Ever!!!

So much good news today. Michael is coming home, His feeding tube is OUT!!!! Dr. says treat him like a newborn. Let him sleep 4 hours at night if he wants to, let him feed more often in the day if he wants to!! Michael is doing so good.

Also, Ryan got a new job today. It is an internship with a company that produces Accounting software. It is in Provo.

Lots of good news today!

Michael dong well

Yesterday they started him on bottles again to see how much he would drink, and then the rest of the feeding goes down the tube. He did very well. One feeding he drank all 66ml of his feeding in a bottle over 1/2 an hour. His belly did not get bloated and he tolerated it very well. This is very good news!

So today they are upping the quantity - 75ml per feeding, but the formula will be the normal 20 calorie, not the enriched 22 calorie.

It is possible that he will be coming home tomorrow (Monday)

Up to 100% formula and 19ml per hour

Today they let Michael drink 2 bottles, but then they decided that was too much too quickly, so no more bottles until at least tomorrow.

Good news is that he is tolerating the hyperallergenic formula well and is up to 100% strength and 19 ml per hour. the 19 ml per hour is the minimum that he needs to gain weight. He has lost a little weight. His belly measures just 33cm today, so that is a good sign. So all things are encouraging right now. He has slept much of the day today.

Dr. Durham says that in all his years working with NEC babies, he has never had one that has needed to go home on this hypo formula, so Michael is a rare case.

He sure is a sweet boy!

Michael Dong Gook, Julie Sick

And I am delirous!! (not much sleep with AnnaBelle last night.) That title was supposed to be: Michael Doing Good, Julie Sick

So Julie came home last night with a fever and throwing up!!! This will never end.. On the bright side, Michael is getting 50% pediolyte and 50% hypor allergenic formula and is doing great (except for starving since he is only getting 13ml per hour) This morning they let him take it by bottle - took 13 ml in 2 min and does not have a tummy ache. His girth is down to 32cm - it was over 37. Yesterday he got rid of lots of gas. They will soon have him on 25% 75% mixture nad will have increased amount per hour. Yeah!!!

Kenneth George Kemp - or Kenneth George Keup - Is this your Baby Picture?

Hello Everyone-

This is a random post. Many many years ago I bought a picture at a second hand store for 10 cents. I bought it because it had to be of some value to someone and it was sad to see it for sale for 10 cents. I think it was in Santa Rosa California where I was living at the time.

Anyway, I think that Google does index blogs. So, hopefully someday Kenneth George Kemp or a relative will someday find this entry and picture.

He is a cute chubby baby!! On the back it says Kenneth George Kemp age 7 mo weight 23 lbs, but no date or any other identifying item. Or the last name may be Keup - Kenneth George Keup.

Here is the picture, also a copy of what is written on the back.

Still having trouble with food - blood in stool

Michael is still having trouble. They have increased the amount of food per hour (I think they got up to 19ml per hour - that is less than 4 teaspons per hour) and he has become increasingly uncomfortable. All they were feeding him was breast milk for food (also some nutrition via IV). So because of the blood in stool, they have stopped that. He is getting Pediolyte instead. They are going back over all his scans and x-rays to be certain that he doesn't have a stricture (narrowing, partial blockage) which would be from damage from the NEC that he initially had. If they determine for sure that there is no stricture, then they will start him over again on a hypoallegenic amino acid formula and then go from there.

Michael is Back in the Hospital

He was projectile vomiting this morning. So had to take him to the ER to get him admitted. He had an upper GI today which ruled out the serious causes (which would have meant more surgery) He is in the infant unit. We spent over 7 hours in the ER for all the test stuff. Now he is in his room. Julie is staying the night. Those of us at home will try to catch up on sleep for round 2 when he comes home again. He was more lethargic today as well.

And Back to Contiuous Feeding!!!

After a straight week, we bumped Michael up to feedings over a 2 hours time period instead of 3 hours (which is a continuous feed) However, he started having a hard time tolerating that and finally just threw up again. So, back to continous feeding, and the gastro specialist is now involved. We hope that we can find out why he cannot tolerate a larger volume of food. Likely more tests next week, will keep you posted.

Michael update & Sad News about Surgeon

Michael had his 4 week post-op checkup. All is well, Especially his weight: 7 lbs 8 oz. That means that in the 2 weeks we have had him home, he has gained 1 lb. He will be totally off his Lasix by this Saturday. So the only meds he will have are for his tummy. This morning we have increased the rate that he is getting his feeds. Rate of 24ml per hour - that is a feeing just over 2 hours time, instead of 3 hours. (then no food until the 3 hour mark) So far he seems to be doing OK with it.

Sad news about his surgeon: Michael cousin on Ryan's side has a heart murmur so they saw a cardiologist at the Orem Primary's clinic. They mentioned Michael to him and he said, I know that case. I was part of the surgery. Then he said that Michael's surgery was the last surgery that Dr. Hawkins will ever do. He has advanced cancer. We do not know if Dr. Hawkins knew that at the time that he did Michael's surgery. But he did look tired Julie said. Remember he said that he would only do the surgery if he got a good night's sleep the night before? At the appointment yesterday Julie asked a little bit, He put in his resignation last week. Wow, he was the most incredible surgeon and has saved so many lives. It is a real tragedy. Julie also talked to a nurse at the hospital, she said that she could not say what specific cancer it was, but that it was not a good one.

Michael and his Continous Continous Feeding!!

This morning we were pretty discouraged. Just a 10ml bottle last evening meant an entire night of bellyache and then finally throwing up this morning. 10ml is only 2 teaspoons. So no bottles, he is hungry tonight, but a much happier boy. He is on 24 hour continuous feeding at a rate of 17 ml per hour. Today the doctor also prescribed another medication. After he got his first dose, he had a great big burp- a dry one, not the small wet ones he has sometimes almost constantly.

If he does not improve as far as being able to speed up feeding, then they will put him back in the hospital for a short stay to run a bunch more tests.

Here is a picture of him watching his music box that Grandma Persson got him for the hospital (he loves music, loves to be sung to)This is this evening. We consider it a big step that he can lay and be content. Had to hold him the entire night last night....

Tomorrow he has his 4 week after-surgery checkup with the surgeon.

Bryson Bowman on Blessing Day

What a cute guy! Tami has more pictures on her blog.

Saturday Before Bryson's Blessing

It was so fun to have the family together. We played on Saturday. Had lots of fun in the back yard. Then six of the cousins had a shower to get ready for Sunday. Here are some pictures:





Ellie the Pope!






Steph was the brave one that got in with the kids and washed their hair. The little ones just sat on the floor and splashed the water.

Saturday Continuous Feeds

Early this morning to late morning Michael was having a hard time, and was tolerating his continuous feeding, but we have to keep at it becuase he needs the calories. His belly was bloated, but then he finally got lots of poopies out over the day, so he is doing much better. We hope that the increased meds have finally helped. He was starving again this evening, so let him have 5 ml of bottle, and this time he has tolerated it a little bit better. So we will just keep going at it slowly but surely. His belly is also softer this evening. He has had a lot of awake time so hopefully he should sleep well tonight.

24 hour continuous feeds

We are going to continue the 24 hour continuous feeding. He is much better than he was, and is catching up on much needed sleep (so are the adults). So we will do this for a while, then slowly start to increase. This evening he was acting extra hungry, so let him take 5ml (1 tsp) by bottle. That gave him a tummy ache. So it will be a little while yet.

Feedings are Going Backwards

So the last couple of days feedings have been going downhill. Each day we have had to lesson the flow rate and he has been throwing up more, we have to be careful moving him. So today he was at the Dr.'s Love Dr. Durham he is so knowledgeable. Then we went to an appointment with the speech therapist (helps with feeding problems and are experts on tummy problems) So now we feel much better. They have upped his meds and we will just start back at the beginning again. No bottles, just continuous 24 hour feeding. Hopefully Julie will get more sleep - she is very sleep deprived.

Got to go, don't have much extra time. Will take Michael for the next shift....

Monday Michael

He started out the week at 12:30 am last night by pullilng his tube out. (finger caught it). So Julie had to put another one in - this was about 12:30 am. Not fun. He was fussy during the night so Julie is tired- she did not sleep well.

today he has guzzled well a couple of feedings, however, this last time he gulped a lot of air and his tummy is distended, something we have to watch for.

He has been cute - so darling when he is awake.

today I did my first feeding all alone.

Sunday - Bryson Bowman Blessing

Sunday was a great day. Bryson Bowman was blessed. I will post pictures when I get my camera back :-).

Michael did well, he had 2 feedings where he drank over 25ml per feeding, another one at I think it was 18ml. All in all a good day.

Saturday at the Bowman's

Since Bryson Bowman's blessing was today, the family gathered at Tami's yesterday to visit (Kevin & Melanie & Family stayed at Tami's) So I took AnnaBelle down for the day. It was such a fun day!!! The kids have so much fun playing together.

NAPTIME
Naptime was an adventure. (all of our grandkids (8) were there except for little Michael) I put AnnaBelle down on the floor of Emilee's room, I had brought a monitor this time. Kevin & Melanie put Matthew down on the bed in the bonus room, and then left for an anniversary lunch at Los Hermanos. Bryson was sleeping his bouncy chair in Tami's room. I think this is how it went:

Heard crying, went to check on Anna, she was still asleep, so the crying was from the other monitor, Bryson. Went into Tami's room, where was Bryson? This quickly became a game of "Find the crying baby" Maybe he is in Blake's room, no his door is open. No baby in Tami's room, went into master bathroom, past the tub, past the shower, turned the corner--Found you!! He smiled at me-- he was sleeping in the closet (less background noise). So picked the cute guy up took him to living room where we were visiting, rocking him in the rocking chair. In my pocket, my phone rang, at the same time over the monitor AnnaBelle began to cry. Grandma tries to gracefully pass of Bryson, pass off phone, and race to Anna. (Don't think it was graceful--sorry dad, I think that was you on the phone, never did get back to you...)Laid down with Anna, got her back to sleep. Came back out to visit. Where did everyone go?? Oh well, they must have gone downstairs. But I should really go upstairs and check on Matthew. At top of stairs see silouette of Tami by bed- trying to nurse Bryson to keep him quiet so Matthew would go back to sleep. Matthew had been screaming. So I laid down on bed with Matthew, he sat up and pointed to his Lighting McQueen blanket and said "cars" - I gave it to him and he wiggled a bit and went back to sleep. Came back downstairs, Anna wakes again, again I lay with her, she goes back to sleep. Later Matthew wakes again, this time mom arrives soon after I am upstairs with him. This was the bouncing granma nap!!

OUTSIDE PLAYING
Kids had a blast playing outside and riding on 4-wheeler. I have pictures, but I let Blake and Allison take a bunch of pictures with my camera today, and it ended up being left down at Tami's.

SHOWER
Picture 6 little cousins all in a shower. Steph with pants and sleeves rolled up in there with them trying to wash them. They had a blast, Steph felt something warm on her foot - Anna was going potty. We figured if none of them pooped, it would be a succesful shower, and it was. Yes, I have pictures--they were so cute and had such a blast! Lots of giggles from the adults that spied on them.

MICHAEL
Michael did well yesterday. He had his mom and dad alone with him all day, he is getting better at drinking a bottle. He did have more of a tummy ache though

Ivan and I arrived home late, transferred AnnaBelle to bed and called it a day

Will post pictures after my camera is found.

Woke up So Cute!!

Michael is always cute, but was especially so this morning. He woke up before his feeding time and wanted FOOD!!! He drank 15 ml in the bottle, and has stayed awake-looking around so sweetly. He is noticeably chubbing up. Here is a picture:

Michaels First Day Home

Here are some pictures from Michael's first day at home. He is doing well, just takes lots of time to do feedings. He just gave Julie a smile this morning.- His second smile. His first smile was yesterday. He is stronger today than he was yesterday. That is good!!

Michael is Home!! (Grandma's)

Little Michael is home. Here are some pictures.

Lots of work, feeding every 3 hours via tube (1 - 1/2 hour infusion) plus meds, etc. Plus Julie has to pump for milk. We will see how much sleep she gets tonight.

He sure is cute - hardly makes a peep.

I will post pictures tomorrow since I can't access the hard drive that they are on right now.

Tomorrow Probably Coming Home!!!

It is likely that tomorrow (Wednesday) Michael will be coming home!!! That is his 4 week birthday. He is tolerating food well. Today they upped the calories of his formula, so he does not like the taste of his bottle as much, so he is not taking as much of it with his bottle.

So we unpacked his pack-n-play today in anticipation!!!

However, both the cardiologist and the surgeon have clearly cautioned that if Michael becomes sick right now it would not be a good thing. So we are going to have to put a bann on visitors for the most part up here at our house. Especially any children. The Dr.'s have recommended 6 weeks to 2 months. They said that if we did have visitors up here that they should keep the baby in a separate room. We will keep you posted with pictures and info on the blog.

We are also trying to be careful where Anna and grandma goes so that they do not catch anything.

Sunday - Doing Better

Well with Michael on Friday they changed the formula and then went back to day one of the learning to cycle. Today he finally got to try a bottle again, and the feedings now are every 3 hours, instead of continuous through the tube. So far so good. No throwing up. He looks much healthier to me today. Hopefully the feedings continue to go well. If so, he could come home on Wednesday.

He is still on a little bit of oxygen. They take him off of it from time to time, but he still seems to need a little bit.

Friday Night Update

They did an abdominal x-ray today - it showed gas and stool buildup. Not a blockage though. Supository did the trick. They are now starting at day one again. 5cc per hour via tube, continuosly. This has now been upped. They also changed the formula that they were mixing with the milk. Apparently this is the stage that keeps infants in the hospital longer after surgery. So we hope that things go better this time around.

Feedings Not Going as Well as Hoped

Little Michael is having a hard time tolerating food in his tummy. He throws up about 2 feedings a day, so he has not put on any weight. They keep trying different things - longer time span (up to 1 1/2 hours) Less of formula, etc. Every third feeding he gets to try the bottle first, then what he does not take of the bottle is put in his feeding tube.

Ryan and Ivan are giving him another blessing this morning (Friday morning) Two days ago they said that if his feedings went well yesterday, that he could come home today. So I guess that it will be a little longer. Julie has been sleeping there each night.

Bottle Today

This was Michael's first full day on the regular floor. He had his first bottle at 10:30 am. This is his first bottle ever--a good way to celebrate his 3 week birthday! (when 2 days old a bottle was dripped into his mouth) It was a little difficult for him - he drank 7cc. That is a start.

Julie realizes that when he comes home he will have a feeding tube for a while. He may also have oxygen. He was on a low dose - 1, but he just did not like that low dose taken off. They have taken him down to .06 for now.

He had a tummy ache tonight. They did try to up the quantity of his feedings because he was doing so good. They think that they upped it too fast, so they are backing off. Julie thinks that this has bought him an extra day stay in the hospital.

Michael is out of PICU

Yeah is on the "floor", that is a regular hospital room #3076. Julie now has to stay with him 24/7. No more expensive nighttime babysitters!!

The swallow test went well. No surprise since he is starving and sucks very hard on his binkie. No bottle until tomorrow though. The next step, which has already been done is to change the NJ tube to NG tube (just pull some of it out so that it ends in his stomach, not intestines) They have also mixed the breast milk he is getting with a high concentrate formula to give him extra nutrition. He still gets some IV food as well, but that should be weaned off very soon.

He also had an echo. It looked good.

We are all very pleased at how he is doing. He is such a cute little guy. He won the hearts of those doing the swallow test.

Monday Update - No test today

Very frustrating. The clerk forgot to enter in the computer the swallowing test for Michael -- the nurse even double-checked yesterday. So the earliest that he can have the test is tomorrow at 12:20. So no bottle yet. He is getting 13cc per hour now thru his NJ tube.

However, he did get his 2 atrium lines pulled out today, so Julie finally got to hold him for the first time in a week today.

He gets x-rays every day, the lungs are still a little wet -- Julie does not know if this is a concern. He will have another ECHO tomorrow.

Sunday Michael Update

He is sure doing well. Every day he has more stuff taken out. While I was there today they removed the 2 pacemaker wires (wires straight to his heart in case it is needed) and the IV line in his right hand - so that hand is free again.

He is just so darling! Dr's rarely hear him cry, so they were a little concerned, but nurse and mom could attest to the fact that he can cry. Most of the time he is pretty content. His cry was real hoarse, but today not as hoarse as yesterday.

Tomorrow morning they will do a swallowing test. If he passes it, then he can start getting food from a bottle.

The Cardio-surgeon PA says that they will not pull his arterial lines (2 IV's going into the chest) until Tuesday. Then he could be moved from PICU to the regular floor. The reason being that they want to follow the book in his case because of his previous infection. The cardiologist thought that still could happen tomorrow.

So we will let you know what tomorrow brings.

Also, there is a big cardio defect DNA study going on. So they took blood from Michael and parents to be a part of the study.

Here is a picture from today. The IV in the arm by his head is now out.

Friday

On Friday AnnaBelle and grandma went to cousin Kaylee's house. When we arrived, this is the state that we found Kaylee in. Yeah, she loves her panties and her butterfly wings-- which she manages to even wear in the car seat!! (the wings that is, I don't think she has left the house with a pantie hat!!



This is AnnaBelle's reaction. She was so excited to see Kaylee!!

Friday - More Progress

His 3 chest tubes are out. He passed two tests today that they have to do to get off the respirator (failed one last night) He needs to pass one more test and then he will be off the respirator - Yeah!! Then his mommy and grandma can hold him again.

He is getting 2cc of milk per hour, and will soon up to 3cc per hour.

Anna and grandma had a good nights sleep last night. Everyone is in good spirits here.

Thursday POST OP

Okay, it is grandma that needs to GICU (Grandma Intensive Care Unit) JUST KIDDING!!! AnnaBelle and I did not sleep very well last night. So Julie took her in first thing this morning to the Dr (while I went back to sleep!) She has 2 ear infections. So I have been running a little slow all day. Tonight will probably be much better.

Michael is doing well. Still on respirator, but they have been turning the settings down. He has the NJ tube in and they are feeding him. Tomorrow hopefully he will be off the respirator and also have the 3 chest tubes out. He is down to about 6 IV pumps (down from 16)Lots of new patients in the PICU. Julie and Ryan, despite what they have been through, see first hand that many other parents are experiencing worse situations.

First POST OP day Wednesday

Michael is sucking on his respirator tube. He may be off the respirator as soon as tomorrow. Otherwise the next day. He also has 3 chest tubes. Julie says he looks a lot better today than last evening. Tomorrow they will start him on breast milk. 1cc every hour. Julie has lots of milk stored up for him. Then they will gradually up the amount. At first, they will feed him with a tube that goes down through the nose, and through the stomach into the small intestine. Does not sound like a fun way to eat to me!!!!

He also appears to have Berry Syndrome. An extremely rare condition. Less than 100 cases worldwide (In 1995 there were 14 known cases, in 2006 there were 26 known cases) Berry syndrome is basically a combination of the two heart defects that he had. Both rare defects by themselves, very rare combined. It is hard to research it because there is so little written about it. As far as we know there are no long-term problems with it. I think that it is just hard to catch in time to save their lives. (This is my conjecture at least) So his case may be written up in medical journals.

He also had a shot today to prevent RSV. He is at high risk for RSV and any repiratory illness.

I predict that Michael has enough Starr in him (and prayers behind him) that he will be surpasing all expectations soon.

Yeah!! Michael is now in PICU

The surgeon explained that the AP Window was the largest that he had ever seen, and that he had only seen 10 in his career. The other repair was more involved because it was totally closed off. Also, he found 3 holes in his Atrium which was not known, so he repaired them. His chest is closed.

He said he should be on ventilator for a couple of days, then on food. He expects him to do well. Said he expects a normal life and that he can play sports, unless he only grows to be 5' 2" "which I can't do anything about"! The kids needed some humor I think.

Julie was racing over to the PICU to see him.

2:35 update

Julie says they are done. They are waiting to talk to the surgeon. She said they did close up his chest, so that I would think is a good sign. It appears that everything has gone well.

Surgery Update

At about 12:15 they were warming Michael back up, they have to cool him down for the bi-pass machine. There is still about 1 1/2 hours of surgery after that.

The repairs are done. The repair of the artery to the gut and legs was a surprise. Instead of being severely restricted it was a complete dead end. No blood could get through. (remember they were keeping another artery open with medication that normally closes the first week of life to get blood down there)So he had to reconstruct the artery from his tissue.
This meant that the AP window he could not reconstruct with tissue, so this was fixed with a synthetic patch.
They still don't know if they will keep his chest open for a while after surgery in the PICU.

They will be doing an ECHO to be sure that everything looks OK before they finish.

Surgery is a Go

7:50 AM looks like it is a go, but they have not taken him back yet.

Surgery was a late start, about 10:00

6:30 AM

So far looks like a go. X-ray is great, some infection blood markers are down considerably as well. No word from surgeon--assume he is still sleeping!

Monday night update

The surgeon finally arrived tonight. There is still a chance that Michael will be bumped tomorrow, for several reasons. One: his abdominal x-ray this morning showed something a little suspicious, so they took another one, which showed something else possibly abnormal. Most likely it is nothing, but the x-ray tomorrow morning must be clear or they will not do surgery. Second reason: the surgeon is tired, he had some real sick babies today, which may keep him up in the night. If he does not get enough sleep he will not do AM surgery.

They liked the surgeon, he is very experienced and has done AP windows before.

Surgery 7:30 am Tomorrow (Tuesday)

The surgeon has not talked to them yet. However the cardiologist and anesthsiologist (not Dan Evans) have talked to them. Cardiologist reviewed the seriousness of the surgery, and that it is possible that he could get another Gut infection since the blood flow to intestines will be restricted during surgery.

He will be the first surgery of the day, 7:30 am and surgery will be 3-5 hours. Hospital stay after surgery can be 1 week to 2 months, depending on complications.

Will post more when they hear from the surgeon this evening.

Michael's Blessing

Last evening little Michael received a beautiful blessing from his father. When we arrived, his eyes were open, looking around. The nurse said he wanted something to look at so she found a toy that made music. He was loving it. He was also sucking on his binkie. The best news was that his stomach tube was out. He was just so darling and precious. His eyes were open during the blessing.

Julie called again during the night. The night nurse said that he loved the music box and that she had to keep pushing the on button every 10 minutes, or else he would wake up.

Today Julie and Ryan left early for the hospital. The neurosurgeons were going to come in for pre-op consult sometime today. So will update when we have news from that.

Surgery is still scheduled for tomorros (Tuesday) but he could be bumped for more urgent cases.

Oh yes, he weighed 6 lbs last night. Nurse said that they are keeping him nourished, but do not want him to put on too much weight, which would put more stress on his heart.

Sunday Good News Update

All news is good today about Michael. They are keeping up with the fluid in his lungs, and his stomach tube is out!!! He sucks on his binky and Julie was able to hold him today. She says he looks really good.

Today Michael will get a name and a blessing with just a small group of 5.

Saturday Afternoon - Michael Update

Julie called at 4 am to check on little Michael and became worried because he had more fluid in his lungs and breathing was faster. She spent lots of time there today. This is not unexpected and they are increasing his Lasixs to keep up with the fluid. They say that he is still doing well, they did do another Echo today to be sure that it is just the fluid causing the problems. He still is in stable condition, just not quite as stable as he was previously.

Friday Afternoon

Julie came home this afternoon feeling relief. The nurse on duty usually does not work shifts anymore, mostly does research. And she is an expert who lectures on
NEC Necrotizing Enterocolitis which is the name for his gut infection. She said that very few babies get through it without going on a respirator. And the fact that he also had heart defects makes it quite extraordinary that he did not go on a respirator. That he was a strong little guy. She thinks the poopies coming through his diaper now is just old stuff getting out.

He is getting stronger and stronger and was sucking on his binkie when she got there. There is a possibility that becuase he is stable that his surgery may get bumped past Tuesday if there is another patient with more urgent needs.

Thanks again for all the prayers!

Friday Morning Update

Michael is doing very well. He is even sucking on his binkie!! He does have some fluid in his lungs, so they will up his Lasix dose. Julie says that he looks very good.

Thursday PM update

Michael looks good (see Julie's comment to Thursday AM post.) Even though he has several little things going on, he is stable. Julie and Ryan has a tour today of the PICU where Michael will stay after surgery. There is a place for them to stay at the hospital for several days by the PICU. His surgery could even be bumped to later because the PICU is so busy right now.

Thursday AM Michael Report

Last night Julie and Ryan were both able to hold Michael, although they could tell that it was hard on him. Julie also got to help give him a little bath.

This morning his liver function is down some and he is having a harder time breathing. He also has still had blood in his diaper, so his gut infection is still not 100% gone. Julie is going down first thing to be with him.

Surgery Scheduled

Michael's surgery is scheduled tentatively for Tuesday. They had to sedate him a little more today because he pulled his stomach tube out!! So when Julie got there she did not get to see any eyes. She says that he looks better than he did. We will try to get a picture later today.

Wednesday - Getting even Better

Julie is trying to hurry out the door. Michael is awake more than they have seen before, blood tests much improved, has bowel sounds. Will post again this afternoon when we know surgery date.

Cleared for Surgery

The NICU says that he is cleared for heart surgery. The cardio surgeons meet wevery Wednesday (tomorrow) to discuss cases. Apparently they have a pretty full week this week, so his surgery may be Monday. We will know for sure tomorrow.

Forgot I think to mention earlier that he is on billy lights now also. He weighs 5 12 He is getting a little skinnier.

Hurrah Good News!!!!

Air bubbles are all gone from his abdomen. The surgery team is no longer following him. He still is fighting infection because there is still a little bit of blood in his stool and a high number of immature white blood cells. But this is a big step. It is a big relief.

Sugery team did say that after he is allowed to eat food there is a 5-10% chance that the intestines may collapse on itself, requiring a surgery, but one that is a small surgery and not as involved.

Thanks so much for the prayer and for putting his name in the temple.

Tuesday March 3rd

No new news. Everything seems to be the same with Michael.

Monday March 2 7:30 PM

Latest X-ray is the same. He is stable. Julie says she can see the spot in his intestines that they are worried about - it is bulging a little. It is still tender to touch the Dr.'s say. We will just have to wait and see and hope that things continue to move upward. Julie got to hold him for 45 minutes today.

Here is a picture from Sunday- this is the bed he is in all day.

Monday March 2 12:30 pm JULIE IS OK

Michael still stable, Julie not so good. She is back at the ER right now. She still feels bad and is now holding water. She hopes that her kidneys are OK.

She is OK and is at NICU will update when she gets home.

Monday March 2 9:00 AM report

Michael's lab work showed slight improvement, his x-ray showed some improvement also. This is definitely going the the right direction!! His mature white blood cells are all being used up in fighting the infection, so all he has left circulating are the immature white blood cells. So I guess it would be nice if he had more mature white blood cells at this point. Don't know how long it takes to make them and then be mature. We are very glad for the news, and will go later this day to see him.

Sunday March 1st 9 pm update

Michael is staying stable. The lab work and xray are the same. Today the staff are much more optomistic, yesterday they all feared the worst. Yesterday was a very very hard day. He will likely have another blood transfusion tonight or tomorrow. He had a blood transfusion last night, I think that I forgot to post that. Part of the feeling of relief is that his acidosis is gone--which can indicate bowel tissue dying. We hope that it stays that way.

There will be no expected brain damage--he has never been short of oxygen. In fact, he is not on oxygen right now. They have a cannila in his nose, but it is just forcing in room air at a higher pressure. In fact if he got any worse yesterday, they were going to put him on nitrogen to decrease the amount of oxygen.

His eyes are always closed, he is always sleeping. They keep him sedated and he has some pain meds. He sure is a cute little one! We can hardly wait to have him home and give him tons of snuggles. That may not be for 3-5 weeks.

Julie's fever is climbing again tonight. We hope that she will feel better quickly. At least yesterday is behind us that was ONE TERRIBLE DAY!!!!!

Sunday March 1st 4:00 pm update

Just got back from NICU. Michael is continuing to stay stable. Some tests are showing improvement, some the same none worse. Yeah!! The faith and prayers and great medical care are working!!

We did learn more. Yesterday the teams were on high alert, expecting his gut to perforate (from dead tissue). Today the high alert is changed to guarded status--low to moderate risk. We hope now that the gut infection will continue to improve. Once he has been on the antibiotic for 7-10 days then they can do surgery.

One reason the gut problem needs to be totally resolved is because during the heart repair, blood supply to the gut will be greatly diminished, which could tip the gut "over-the-edge" causing then the surgery we are hoping not to have. (The gut surgery entails a serious of surgeries over 2-3 weeks, with the abdomen left open, and causing the heart surgery which really needs to be done ASAP to wait)

Update Sunday, March 1st AM

This morning the nurses said that he is still stable. Whjite blood cell count is staying stable. We hope that it will start to go down. He is more and more uncomfortable with the medication they are giving him to keep the fetal heart flow open, instead of closing as it normally does the first week of life.

Here is the posing at My Family Site about last night. Will it ever end? Also pray for Julie's milk supply which is frustrating so far:

Grandma & grandpa are OK, just tired. Julie and Ryan not so good. Last night Julie went straight to the ER at LDS hospital from the NICU. She has had a fever despite taking percoset and ibuprofin concurrently. Both of those wore off while at the ER and the back pain became more apparent. She had 2 kidney infections (a UTI that had progressed) They would have admitted her except for Michael. So instead they gave her an IV of antibiotics and she started to break out in hives, so they stopped that and treated the hives and changed to a different oral antibiotic. They got home at 1 am. They were exhausted, but unbelievably Julie was more upbeat since the double whammy of antibiotic already had her feeling better and the latest news from NICU was that the last x-ray showed stomach inflammation going down and his white blood cell count was no longer climbing.

Thank you so much for the prayers, we know that it is helping. We are all fasting today for Michael.

Additional Note: Ryan is also not feeling well. He has an irritable bowel that flares up under stress.

Pictures in the NICU

These pictures are at the NICU at Primary Children's Saturday, Feb 28th.
At the end he grabbed his mother's finger.

Michael in NICU - Progressive news

I am copying and pasting the thread on the Ferrell Family MyFamily Site:

Jaelene Starr - Feb 27, 2009 Friday

Little Michael has been in NICU since yesterday. His blood sugar kept going down, he will not suck and CO2 builds up too high. All these things are a concern, but are a result of being a little early. They had to feed him with a feeding tube yesterday to get some food in him. All in all, he actually is not doing terrible--just needs a little time to get stronger and stabilized. Julie will be discharged today and as long as they have rooms, they will be able to rent a room as a hotel stay. They are in the new IMC hospital. The NICU is really something. Visitors have to go to a scrub sink and scrub for 3 minutes before they can go in.

Jaelene Starr - Feb 27, 2009 Friday
The test results are in. He has two heart defects which are causing all of his problems. He will have open heart surgery the end of next week.

There are 2 systems in and out of the heart. Two arteries from the different systems have a "window"that is they are partially fused together-blood from the 2 systems can mix. This is causing the build up of CO2.

The second problem is that the aorta branch that feeds blood to the lower trunk and legs is too narrow and cannot supply enough blood. This has resulted in the bleeding in the intestines. Right now it has caused air bubbles to form in the intestinal lining and is actually the most critical situation right now. It can easily cause a perforation. For this reason they are taking a x-ray every 6 hours to be sure it has not perforated. They have put a pic line in and are giving him prostaglandin which will help reverse this problem and should help the intestines heal some- which is the desired state for surgery next week.

They do expect that this can all be corrected with surgery and that he will not have long-term problems--a great blessing.

Julie asked how many open-heart surgeries with bipass machines they do on little guys like this. The answer usually 3 per day!!! Lots of parents in anguish, lots of medical miracles.

Julie of course is a basket case with the after-birth hormones. She is running a fever right now.

Jaelene Starr - Feb 28, 2009 - Saturday

I spent a lot of the day in the NICU with Julie. The defect that is mixing blood in Michael is very rare. Primary's sees it only once or twice a year. The artery coming in and the artery coming out cross, and where they cross there is a window, they said that it was large. He is actually is doing worse. Will likely end up on a ventilator. They would like to do heart surgery ASAP, but we did not totally understand the problem with his gut. They cannot do the heart surgery until that is resolved. His white blood cell count is climbing, indicating that the gut has increased infection. It is possible that some of his intestines actually died. So another surgery team is on standby for that. They won't know yet until more time passes. The gut surgery would have to be first. It is a very complicated situation right now even for the great and fantastic teams of Dr.s at Primary's because they have to use so many medications to try to balance out the problems in his heart.

Michael has his First Bath

The hospital does their first bath in the room with the family. It was a real treat! In the last picture she is showing off his hair.

Julies new baby: Michael Ryan Persson

There is a lot going on with little Michael. He was 6 lbs 12 oz and 21 1/2 inches long, 18 days early. I will post things hopefully in chronological order.

Here are some pictures of the new little guy:




Big sister and baby Mikey




Julie and little Michael. Delivery was a little rough at the end, but she is doing great.




A cute, sweet little guy

I have been at Tami's for over a week now. She has had a very long recovery with a stubborn uterine infection. Pretty crazy since she had such an easy delivery - she should have been up and normal by day 3!

Anyway, here are some pictures of Bryson at 2 weeks old. He weighs 6 lbs 13 oz now! He is an exceptionally good little baby.



See his furoughed brow. He is a little worrier at times.

Emilee is very creative with playdough! As for me, I made a snake....

Blake is a hoot with basketball. Well, he is always a hoot. Here he is shooting baskets: