Moved

So the big news today is that they moved Jimmie. He was in Tulip Lane in a room that had walls and a sliding door since the night of his birth. They needed his room for a very sick baby who needed a very quiet place to be. Since Jimmie is doing the best out of the babies on his row- he got bumped. Rachael is happy to let this very sick baby have Jimmie's room. However to be totally honest the move has really upset and stressed Rachael- in general. She says, "I know this really shouldn't be upsetting me, but it is!" I think the communication to Rachael about the move could have been a little bit better and that might have really helped.

Jimmie is now on Daffodil Lane in a much noisier part of the NICU. His room doesn't really have walls and it has a window. Basically it's the "change" that is freaking her out. And also all of the babies that were around Jimmie she knows and she knows their Mothers and their situations are similar to Jimmie's.(micro-preemies)So they will miss their friends. Mom said lets be excited about who we will meet and what God can do with our new situation. There is a possibility one of the babies in Jimmie's old section (tulip) is going home next week- and then Jimmie may get to at least move back to his section. Rachael wants us to pray that would happen.

The thing is Rachael is just barely hanging on with her emotions and her sanity through this whole thing. Jimmie is doing wonderfully and she is very grateful, but that does not change how incredibly emotional and stressful this entire situation is. So something as small as moving Jimmie to the other side of the NICU has rattled her. It's rattled her security a bit. And now she's not sure if Jimmie's (Rachael's favorite) Nurse Carolyn will be able to take care of him.

This concern carries into an over all concern that is warranted and this is consistency in certain aspects of Jimmie's care. Having just a few nurses who know Jimmie, know Rachael, Justin and the family and know the routine really takes a lot of burden and stress off of Rachael. She knows that the bigger picture is that it just means Jimmie is doing well, but she can't control how she's feeling so please pray for her to be at peace and pray that Carolyn can still be his assigned Nurse when she is working. Pray that her security can rest in Him. That she would be blessed with peace that passes all understanding. Pray for grace and strength for Rachael when she has to work harder to achieve the specific care she wants for Jimmie.

Jimmie has gained 2 ounces! So he is 2 pounds 15 oz. Woooooooohooooo! 3 pounds here we come. (-: However the fortifier that is helping him gain like this is really causing him to be gassy and have reflux. He's just very uncomfortable. So pray for his body to adjust to that.

Update on Jennette- she is being induced right now to have Maddy. Jennette is showing signs of Preeclampsia (high blood pressure and other things). This means it is definitely time for Maddy to be born. Jennette has a blog for Maddy and I am updating it for her. It's linked over on the right titled Maddy's Blog. Check it out for more detailed information. Thank you for praying for her!

Love,
Amber

Kisses For Cousin Jimmie

New pictures!

Jimmie's Great Grandma Paula bought him a little (and I mean LITTLE) onsie. He is so so SO SO CUTE!!!!!! Aaaaaaa I can't stand it. I can't wait to kiss his cheeks.




You can compare this to the picture in the header of this blog and realize how much bigger Jimmie is in Justin's hands. And Jimmie is totally smiling!


Awwwwww Daddy loves that boy!


I love his little hand there under his chin as he sleeps.


Jimmie is doing great. He had a big poopy so that's good! His crit is starting to lower again. It's at a 30. (they like it at 40) However they will really play the waiting game this time. He is older and bigger so we are really hoping eventually he is able to get it up on his own. The Doctor said they could let it get as low as 19 if he wasn't symptomatic. So we will keep praying about that.

Jimmie tried breast feeding for the first time today. He got about two sucks in and then got tired. But Nurse Carolyn says that's a good start! Rachael loved it because she got to see his face while she was holding him for so much longer than usual. The way she normally holds him it's hard to see his face.

Jimmie only gained a few grams today, but he has had big gains the last two days so that's okay.

So my daughter McKenna LOVES watching the video and picture montage of her cousin Jimmie. The video has been watched on "One True Media" and "You Tube" combined over 750 times! McKenna asks to watch it numerous times a day. So we are bumping up the numbers. LOL! She says, "dimmie or just eeeeeeeee" when she wants to watch it. So today I took pictures to show you what she does.

A look of awe- seeing her baby Jimmie.


Kisses for cousin Jimmie.


And then she laughs in glee at the end. She is just sure that when Aunty Ta Ta (Rachael) looks at the camera and smiles that she is smiling right at her!


So if any of you have children who are loving to watch Jimmie send me pictures of them watching the video! I'll post them on the blog. (deames4@kc.rr.com) I know Jimmie has lots of 2nd cousins, I know the Voss and DeGhelder kids (in Vegas)love and pray for Jimmie and all of our little ballet students...

A special prayer request today for my cousin Jennette. She is the one who helps me with the blog at times. She is being induced possibly Tuesday or Wednesday morning with her 2nd daughter Maddy. She is a week overdue. Maddy is healthy and Jennette's pregnancy has gone very well. A lot of you prayed last year for Jennette and Jason when their 1st daughter Gabby was born very sick. Gabby passed away after 8 days in the NICU. So you can imagine Jennette and Jason and all of us who love them are very anxious to meet Maddy and to have everything go well. I will post an update on Jennette and Maddy with Jimmie's update tomorrow evening. Rachael and Jennette had such a hard time last year losing their daughters. Aunt Suzy (Jennette's Mom-my Mom's sister) has said what a glorious day it'll be when Maddy and Jimmie get to meet. That will truly be a wonderful day for our family.

We are so grateful for your care and prayers for our family!

Love,
Amber

Fortifier Side Effects

Another good day for Jimmie!

He gained 32 grams. So he's up to 2lbs 13oz. So that fortifier they are putting in Rachael's breast milk is really helping him gain weight. However an unfortunate side effect is now he is constipated. )-: They put in an order for a suppository- poor guy. This is very common. Hopefully his body will get used to it and everything will move as it should. Oh dear-- so now guess what we have to pray with our "fat prayers" and our "crit prayers"?? You guessed it- . . . "poop prayers". LOL! My son will love that. (-: He'll laugh his head off.

Lord please help Jimmie's body work as it should! Though this is not much of a concern as of yet it is actually very important that this is worked out fairly quickly as bowel issues can be extremely serious in preemies.

Along with this little bowel issue he's having he also refluxed today. He had "throw up" coming out of his mouth and nose. They had to suction him out so he could breathe. Man- that had to be uncomfortable. So anyway-- though this fortifier is good for weight gain it is causing some unpleasant side effects for him.

His swelling is better today- so that's great.

Thank you for your prayers! You guys are all so awesome!

Love,
Amber
P.S. I'm gonna start bugging Rachael for some new pictures and video to post. I haven't seen my little man for over a week! Some of us are sick here so I didn't get to go visit this weekend. )-:

A Day Of Rest

Jimmie is doing well.

Rachael has been really exhausted for the last few days so she stayed home and slept until mid-afternoon. Justin spent the day with Jimmie and then Rachael came up later. I'm so glad Rachael was able to rest today and catch up on some sleep. She sounded so refreshed. And what a great day it was for laying around. KC weather is just insane. We had rain, thunder, freezing rain, sleet and looks like there is about 4 or more inches of snow out there now. And it's springtime! And in a few days it'll be 60 degrees. And soon they'll be talking tornadoes. The power was out this evening in Overland Park and the hospital was running on it's backup generators. You don't think about that much unless your baby is being kept alive by electricity and then that's a little sobering. Rachael was holding Jimmie when she heard the noise of the generators kicking on.

Jimmie weighed in today at 1244 grams that's up 35 grams from yesterday!! AWESOME! So that's 2lbs 11.88oz!!!

Rachael said Jimmie was quiet and slept again a lot today which sometimes means he's having a growing day. So hopefully he'll gain big again tomorrow.

His periodic breathing was better today, but his oxygen was needing to stay a little higher, so Rachael is still worried about his crit levels. They will probably check them on Monday.

A new prayer request- Jimmie's hands and feet are a little swollen. This is a common problem. He's peeing well and everything so they are not really worried it's just another thing to keep an eye on. Another thing that is common with prematurity. Pray all swelling goes away and that his whole body is safe and healthy!

Knowing you all are praying is so comforting to us!

Love,
Amber

Making Headway

Jimmie had a bath today. Rachael said he just absolutely LOVED it. He settled right in and was so relaxed.

Jimmie's Doctor has decided she will let him outgrow his caffeine. They will not up his dose as he gets bigger and that is how they will wean him. Also she said something today that I thought was totally exciting and amazing. She said in a couple of weeks she was going to try to start weaning him from oxygen. Room air is 21% and he's right around 23% a lot of the time in the oxygen hood. Wow! Go Jimmie go! (-: Also they may start the beginning stages of trying to teach Jimmie how to "nipple" his feeds next week. That's the NICU term for learning to breast feed and drink from a bottle. Rachael will definitely be trying for breast feeding.

Rachael asked for prayers for Jimmie's crit (hematocrit)levels. They'll check his levels again on Monday. He's starting to have some "periodic breathing" which is what he was doing before he needed his last transfusion. And she thinks he is looking a little pale again. It is very common for micro-preemies like Jimmie to have numerous blood transfusions, but we are really hoping his body can make a lot of good red blood cells. So lets pray "crit prayers" along with our "fat prayers".

His heart rate has been much better. Still a little higher at times, but nothing the Doctor is worried about.

Thank you for continuing to fight with us. Your prayers are powerful!

Love,
Amber

P.S. I forgot to add they are adding more calories to Rachael's breast milk to try to help Jimmie gain better. They would like to see him gain like 20 grams a day and today-for instance- he only gained 7. And yesterday he lost . . . Come on Jimmie-- you gotta chunk it up little man!

No Tachy No Brady

I’m glad you all enjoyed the video montage. I loved doing it. Your comments and emails are all so uplifting! I still cry every time I watch it. I posted 2 permanent links on the right hand sidebar. The top one is to “you tube“ and underneath is the “one true media“ share page. If your computer wouldn’t let you watch the one I posted try both of those links and see if you have any luck. Jimmie is in HQ ( High Quality) on you tube! Once you are there if you click the HQ on the lower right of the screen it’ll load up looking sharp and clear! Also you can click the “get codes” on the montage I posted yesterday here on the blog and copy the html to post the video anywhere you want!

Jimmie had a higher than normal (for him) heart rate (tachycardia) yesterday evening. He seems fine, but Rach just noticed it and so did the nurse. It went over 210bpm and the alarms went off while Dad was there late evening. He seems fine today. The Doctor doesn’t seem too concerned as of yet. Jimmie receives caffeine therapy with his feeds. And he received quite a big dose last weekend when he came off the ventilator. It helps him remember to breathe and helps with bradys (bradycardia-low heart rate). Perhaps he is suddenly becoming a bit more sensitized to it. They have checked his levels and he is at the higher end of therapeutic levels. He is also still receiving Xopenex treatments (every 12 hours) for his lungs and that drug could be contributing to a higher heart rate as well. (Thank you Ellie-my cousin who’s a pharmacist-for confirming I got the right drug!) AND he is starting to be awake and very aware for longer periods of time. But, regardless- lets pray his heart rate stays in a healthy normal range. No tachy! No brady! (-:

Jimmie’s IV is finally gone! So all of the outward effects of last week are now gone. Wooohooo. Evidently the IV can weigh as much as an ounce though. Jimmie’s weight today without the IV was 1202 grams or about 2lbs 10oz. Keep praying those Fat Prayers!

Mom (Andrea) and Rachael took a 2 hour long infant CPR class today offered and highly recommended by the NICU. Mom BROKE her baby doing chest compressions. LOL! It’s chest lost all of it’s air and caved in. The instructor said- that doll must have been on it’s last leg. I say, “Sheesh Mom- you might want to take a chill pill, be gentle! (-: Justin didn’t go to the class because he was skipping out! Just kidding! (-; He’s a trained EMT as well as Firefighter.

You guys are all so awesome for your care for us and your prayers!

Love,
Amber
P.S. Rachael just called and said the Doctor decided to discontinue the Xopenex to "as needed". So lets pray Jimmie DOES NOT need it!

Faithfulness- Video And Picture Montage

Happy 6 week Birthday Jimmie! I love you very much.

This is a montage of pictures and video of the journey up to now. The song is my Dad's (Jay EuDaly) http://masterguitar.com/html/jeudaly.html
from his CD "My Ship". He wrote the song and performed it.

Make an on-line slide show at www.OneTrueMedia.com

Love,
Amber

A Long Road

Jimmie broke 1200 in grams today. He weighed in at 1206 which is 2lbs 10.54oz! Woohoo! Go Jimmie go!

He is doing really well. Mom said for some of the afternoon he was only on 26% oxygen. 21% is room air. And remember he is completely breathing on his own without positive air flow in his nose. This is so awesome! One of the Nurse Practitioners who hasn't been in for a while checked in. She said she was hoping to find Jimmie off the ventilator after his bad week, but she was so surprised to see him only in the oxygen hood. She was wowed!

For anyone who really cares about the specific medical details Rachael told me last night that they are using Xopenex in Jimmie's lung treatments- not Albuterol. I think I'm getting this right. I'd hate to get it wrong AGAIN. She mentioned Xopenex is supposedly less likely to cause the tachycardia. Or at least not as badly as Albuterol. She is saying these drug names to me over the phone and we have no idea how to spell them. I always look them up online. (-:

Yesterday the Nurse Practitioner was reiterating some things that Justin and Rachael are learning about Jimmie's road to health and normalcy. What the Doctors and Nurses are telling Rachael and Justin is that the first 2 years of Jimmie's life are critical for his health and prognosis. It is critical that Jimmie's immune system be given time and rest. What is *highly* recommended may seem paranoid or over the top, but they are being counseled that this is the best thing they can do for their son. And that is to keep him away from public places, especially indoors. Any place where there is a crowd of people is not appropriate for Jimmie. All of the common colds and virus' that float around can do great damage to Jimmie's lungs. I mentioned RSV yesterday. That is a very common bug that is very mild in older healthy children and healthy adults, but for Jimmie it could be at the very least extremely damaging if not deadly. The Doctor told Rachael yesterday that RSV kills these babies lung tissue. They have such little lung tissue as it is that in order to survive they end up being on the ventilator for a VERY long time.

It is recommended that visitors to the home call first and must have absolutely no symptoms. And there has to be strict sanitation in the home. After 2 years of age these extreme restrictions can be lifted some. Rachael mentioned she and Justin might write a letter to close family and friends when Jimmie gets out of the hospital detailing what she and Justin are thinking specifically along these lines. So anyway-- it'll be a long road, but well worth it in the end.

Jimmie is doing so well!! I'm so thrilled with how he's recovered from last week.

Love,
Amber

P.S. I'm going to post something very special I've been working on tomorrow in honor of Jimmie's 6 week birthday. You guys will LOVE IT! (-:

Jimmie Video

This is a video Justin shot right after Jimmie's bath on Saturday. The first part is a little shaky and hard to see, but then it gets good!



Jimmie is doing really well today. He's very content and happy to be held for hours. He is not having too many desats or bradys.

He received a special shot today called Synagis. It's a medicine used for "prophylaxis which is a monoclonal antibody against RSV". From what I understand- with immunizations you are actually causing your own body to create an immune response (antibodies)by introducing the disease to your body. This is basically a shot of RSV *antibodies*. So Jimmie's body is not being exposed to RSV- he's just been given antibodies in case he is exposed. Again this is how I understood it. This shot is VERY expensive (hopefully insurance will cover it) and is reserved for babies and children with Chronic Lung Disease and other serious heart, lung and immune problems. Chronic Lung Disease is defined by being on oxygen for more than 30 days after birth. The Doctor recommends this shot every month of RSV season- which I think is October-April. So Jimmie may have 1 more. They held off last month. Rachael was a bit nervous because he had bradycardia (slow heart rate) with the Afrin in his nose and he sometimes has some mild tachycardia (high heart rate) with the Albuterol(lung treatment). He has done fine with this Synagis. No ill effects have been noticed.

The Nurse Practitioner made the comment today that what happened last week wasn't really Jimmie's fault. It was really because his nose had been compromised. She wasn't trying to find blame, her point was just that he continues to be a superstar! And his nose has actually been compromised so badly BECAUSE he has done so well. The Doctors just do not have much precedent for a micro-preemie like Jimmie only being on the ventilator for 5 days. Jimmie's Doctor said the other day that he most likely will need plastic surgery to fix his septum. Not right away or anything, just eventually. )-:

Jimmie weighed in today at 2 pound 9 ounces! He's really chunking up. (-:

Thank you for your continued prayers for Jimmie's health and safety.

Love,
Amber

P.S. LOL! I totally got his weight wrong when I posted this earlier. 2 pounds 9 ounces is right!

Breathing Treatments

Jimmie is doing very well. He is still breathing without air flow support. He has an oxygen hood over his head when he is in bed and a stream of oxygenated air blowing on his face when he is being held.

He is receiving breathing treatments to help his lungs recover from aspirating. They are better and the Doctor pushed the treatments back to every 12 hours today instead of every 6. He handles the treatments ok, but sometimes has a bit of an elevated heart rate- which is a side effect. So pray his body handles these treatments in the best possible way.

Rachael held him for about 3 hours this morning. It feels great for her to be able to do that again. Jimmie is very happy and content when he is on Mommy or Daddy's chest.

Jimmie's I.V. has stayed good and he only has 1 more dose of antibiotics. That is a big prayer answered. He was having a really hard time with that for a couple of days.

I'll post a fun video clip tomorrow!

Thank you for your powerful prayers for Jimmie's health and safety!

Love,
Amber

Praise The Lord

Jimmie is doing very well considering what he has just been through. We are so grateful. His situation is that he does not have ANY positive air flow at all in his nose. When all of this happened he was still on 1 liter on the “low flow”. This forces air into your nose. It helps the baby not to have to work quite as hard sucking air in. Because Jimmie’s Doctor’s best guess about this “event” had something to do with his nose- she feels this is the best thing right now. He is having more retractions in his chest trying to breathe this way, but for the most part he is doing really well. The big concern is that this does not make him work too hard.

I think he’s 2 pounds 6 ounces. Which is pretty good. He didn’t go backwards this week. But they are going to watch his weight gain very closely as well as his hematocrit which is still hanging around 36. They like it to be at 40. Pray really hard his body starts making a lot of blood on it’s own. We really do not want to face another transfusion. And that he can keep gaining weight at a respectable pace.

There are going to be issues upcoming to work out related to not being able to put the feeding tube in his nose. Eventually he will need to start learning how to breast/bottle feed and the tube not being in his nose will be an issue. But we will cross those bridges when we come to them. Also they move the tube to the nose because often the baby’s throat gets swollen, red and irritated from the tube. Pray Jimmie’s throat stays safe and healthy. Also a lot of micro-preemies go home on oxygen with a nasal cannula. All of these things will eventually be dealt with.

But the main thing Rachael has decided she will not let go of is, “What happened? And why?” When Jimmie gets big enough and is able to tolerate more testing this will be pursued. We might never know for sure. But there are things that can be ruled out. Since we don’t know exactly what happened and why- we can’t know for sure how to prevent it from happening again. That is very worrisome to us! Jimmie’s Doctor said she has seen unexplained bleeding in Preemie’s many times, but not the way it presented with Jimmie. He suddenly started screaming like something HURT. Carolyn (Jimmie’s awesome nurse) has said that in the 20 years she has worked in the NICU she has never seen that happen- the way it happened- to Jimmie.

Last Saturday when they first tried to put the feeding tube in his nose- Rachael (if you remember) had taken her first day off from the NICU. She feels terrible now because she had already decided she was not going to allow the feeding tube to go in his nose. Kathy- (Justin’s mom) said Jimmie was crying really hard as they tried to get it in one side, failed and then put it in the other side. We think this could have been the start of the event. Although his nose being compromised and in trouble has been on our radar for weeks now. Rachael and the rest of us “family doctors” (-: think it was vascular and probably a rupture. But cysts, tumors, congenital malformation all of these other things need to be ruled out. So just pray for there to be - in time- some answers. And pray that in the meantime Jimmie stays safe and that we are taking all of the right steps for this to NEVER HAPPEN AGAIN.

Justin held Jimmie for a couple of hours today. Daddy and baby were very happy and content. Rachael is extremely relieved right now, but understandably nervous about the lack of answers.

Praise God that Jimmie is doing so well. Thank you Lord for being with us and for your faithfulness.

Love,
Amber

Good News!

Jimmie is really fighting! Go Jimmie go! Extubation went smoothly- thank God. Rachael, Mom, Dad and I were all there at the hospital with Jimmie. Rod came shortly after. Kathy will go by after work. Justin is working for the first time since Monday.

They have Jimmie in an oxygen hood. This is asking a lot of him because there is no positive air pressure in his nose at all. He was having some serious desats and bradys for a while. They were having to keep up almost constant stimulation to keep him close to acceptable levels. Jimmie always receives caffeine when he eats. They decided to bump up his dose to help stimulate him. He was just forgetting to breathe or taking shallow breaths. That seems to have helped quite a bit. He is much more stable at the last update. He also received a breathing treatment as his lungs were "pretty stiff" in the doctors words.

Below are pictures we took today right after extubation. Jimmie in his oxygen hood.




So overall this is extremely good news. It's hard to tell now if he is still bleeding. The last few times they suctioned his vent tube they either got "next to nothing" or "brown blood". They have carefully suctioned his throat and mouth once that I know of and there was no blood. Thank you Jesus! We are very relieved and excited today.

Please pray that Jimmie can continue to handle the oxygen hood, that he breathes deeply and regularly and that his lungs completely heal from the effects of aspirating. And most of all that this bleed is over and NEVER COMES BACK!

Hopefully we are on the road to healing from this terrible week. We are all still having "post traumatic stress" from Monday. Each of us are reliving it, but hopefully working through it. For a while on Monday it was not clear whether or not we were losing Jimmie. There are just not words for how that felt. Justin told his Mom he just didn't know if his little boy was going to make it. Rachael didn't sleep or eat much until Tuesday night. By Tuesday when the Doctor started suspecting it was not a pulmonary bleed we were much more encouraged for Jimmie's outcome. And by Wednesday when we realized he was not sick that was another boost. We are very very thankful to God to have come to today and little Jimmie is breathing on his own again without much bleeding.

Pray for us to rest in peace and continue expecting only good things for Jimmie. Since this whole thing started at about "a month" into the situation just as we have really started settling in and feeling comfortable things have suddenly turned. In fact both times I have let my cell phone run out of batteries while I've been teaching I've been told by someone your Mom is trying to get a hold of you. The first time was the day Rachael went into labor. And then Monday- my phone was low on batteries and I just let it run out. I was told to call my Mom and received the- "Jimmie is bleeding into his lungs and they are working over him" news.

We are extremely thankful this wasn't worse. As bad as it was- it could have been much worse. We have been warned that the NICU journey with a micro-preemie can be a roller coaster ride. We know we have been extremely fortunate so far. But to be totally honest we are all so exhausted. Deeply deeply exhausted.(The year leading in to this one was pretty hard on our whole family for numerous reasons) God is so faithful and we continue to have strong faith for Jimmie. Please pray for us to keep up the strength!

Below are pictures Rachael took before Monday.





Jimmie- we are so very proud of you! You have been so brave and strong through this.

Love,
Amber
P.S. Notice how pink he is in the picture from today and how pale he was before the transfusion Monday. It's been hard because a lot of us "family doctors" still feel the transfusion was a factor in all this, but we do understand he needed it. Lets just pray he keeps his hematocrit up from now on!

Extubation This Afternoon

It could be later this afternoon before they extubate Jimmie. Mom just called to explain the NICU received 5 babies this morning and the Doctors are very busy. We don't really know for sure when it's going to happen. Keep praying and hopefully his bleeding will stop completely before they extubate!

Jimmie was very upset this morning. Crying and agitated. He wouldn't calm down even when Rachael was holding him so they had to give him some sort of sedative to calm him. After that he slept on Rachael for a couple of hours. His blood gasses afterwards were very good. They don't know why he was so agitated. His bleeding hasn't picked up or anything. Who knows at this point. He could just be "DONE" with this whole thing. The I.V. could be hurting him, the Ventilator could be upsetting him, maybe he missed being held. Sometimes babies just scream for a while. Regardless pray for his little psyche- that he is comforted and peaceful.

I'll let you know as soon as I hear about extubation. Pray pray pray!!

Love,
Amber

Making Headway?

Rachael called my Mom around 9am and said Jimmie's bleeding is still significantly less, but that it hasn't stopped completely. However his Doctor is now SURE that it is not originating in his lungs because his lungs sound "crystal clear" this morning! They were going to have Rachael hold him for 2 hours and if his blood gasses were good after that they are going to extubate him.

This is AWESOME news, but it will also need to be covered in prayer. They are hoping the blood will take a safer track to his stomach after they extubate him. And now they are going to have to work something out that does not compromise his nose. They are talking about an oxygen hood of some sort or cutting the prongs off the nasal cannula.

This is scary because we do not want Jimmie aspirating blood again! Pray really hard that everything goes smoothly and they figure out how to help him breathe while keeping his nasal passages safe. And-of course- keep praying for the bleeding to completely stop!

They are hoping to extubate him because he is so stable and his lungs sound great, but also because just in case the ventilator and it's tubing may actually be irritating the spot that's bleeding and preventing total healing. Since the only thing they are positive about is that the bleed is not in his lungs- they are entertaining the possibility that it could be in the back of his throat/trachea as well. So pray that they are able to very safely and gently extubate him.

We are very encouraged this morning. Praise God!! But we are also very nervous!

Love,
Amber

Another Hard Day

Well- it’s been another frustrating stressful day. This morning Jimmie’s Doctor decided to do something a little more aggressive and put Afrin -a drug that is supposed to constrict blood vessels- in his nasal passage . 15 minutes later Jimmie started having some serious bradys. His heart rate overall was low and it kept dropping into the 70’s. To put this in perspective- Rod said his training as an EMT has them doing chest compressions and CPR on a baby whose pulse is under 80. The positive thing was Jimmie’s oxygen saturation was staying in healthy ranges even during his bradys. The Doctor came in and said this was an apparent bad reaction to the drug. She rinsed and flushed the drug out of his nasal passages and his heart rate improved immediately. He is still struggling with bradys some though and it’s been 6 hours. So pray that side effect wears off and his heart recovers quickly. The drug didn’t stay that long in Jimmie’s nose. I don’t know the time frame, but we are hoping maybe it was in there long enough to help his bleeding issue. That drug is obviously now out of the question.

Rachael is cautiously encouraged that this afternoon and early evening when they have suctioned Jimmie there seems to be much less blood. Lets pray really hard that this is the beginning of the end of this bleed. Rachael said Jimmie was acting really lethargic this evening. He’s had another hard day. Besides the bad reaction to the drug. His I.V. keeps going bad. He is back on full feeds so they are only using his I.V. for his daily dose of antibiotics. The nurse said he had a traumatic time while they were trying to get his I.V. in a new vein this afternoon. Rachael says please pray this one stays good for a long time. I think he has at least a few more days of antibiotics. Jimmie has been stuck so many times since Monday Rachael can’t even count. The poor guy is starting to desat when you touch his feet because he expects pain. It really breaks my heart. He is struggling and uncomfortable with the ventilator. He was only on it initially for 5 days so Rachael can tell he really does not like it. The Doctor has literally said she is too chicken to extubate him right now. Rachael agrees with her. They have to be as sure as possible that the bleed has completely stopped before they can even think about it because they want to avoid what happened Monday afternoon at all costs.

The other upsetting thing is Rachael was told she needed to be out of the NICU from 2 to 6pm today. A baby on Jimmie’s row has to have surgery. They are turning that portion of the NICU into a sterile operating area. The surgery just started at 8:30pm. So Rachael will just go home and try to sleep. Please say a prayer for this baby who has to have surgery that it would be successful and safe. It’s been tough for Rachael to not be by Jimmie’s side when he’s having such a difficult time.

I am really REALLY hoping the bleeding is slowing down. Please pray for this bleed to completely stop and for Jimmie to heal. Before he can make any headway or recovery this has to happen. Pray for him that he would be held by God and comforted during this time. He hasn’t been in his Mommy or Daddy’s arms since Monday morning.

I know there are many many people praying from around the world. I’ve been told some pretty awesome things about who all knows about Jimmie, is reading the blog and praying for him. The words “thank you” are not adequate. It is so comforting to know all of your faithful prayers are covering Jimmie!

Love,
Amber

Clarification

Okay- I need to correct something I wrote last night. #3 on "The Bad" list-- "Jimmie is still aspirating blood or bleeding into his lungs" may not be accurate. From what mom and I understand now-- the blood they are suctioning out of his ventilator tube is not necessarily coming from out of his lungs. I understand there is a device (like a balloon type thing) that is keeping fluid and blood from running into his lungs from the top- near the ventilator.

The reason the Doctors feel this is not a pulmonary bleed are these:

Jimmie's respiratory function has been improving despite the fact he is still bleeding.
He was even without oxygen support last night for a while.
He's taking more breaths over the ventilator.
He's had 2 or 3 x-rays since this happened and I think the 2nd one had improved from the first and the 3rd was about the same as the 2nd. Which really wouldn't make sense if he was still bleeding into his lungs.
They feel when they listen to his lungs they are sounding less and less wet.
Also they are VERY experienced with pulmonary bleeds in micro-preemies. They say that the blood would be more pink and frothy then it is and that Jimmie would be much LESS stable.

All of this to say- nothing is known FOR SURE but all signs are pointing away from a Pulmonary bleed. And I was most likely mistaken to say that he was still aspirating blood.

So when this "event" occurred he cried really hard and aspirated the blood. They quickly intubated him and protected the top of his lungs. However the blood still kept coming at times pooling in his mouth and running down the back if his throat. As to why the blood is still collecting near his lungs and not his stomach? Rach and Mom spent a long time discussing things yesterday with Jimmie's nurse. This guy was taking care of Jimmie for the first time. He had a very analytical, but open mind and seemed to be a "problem solver" . . . He said he thinks the ventilator tube is acting like a wick and the blood is trickling down and following the tube. Seems like a pretty good explanation to me.

Anyway- since I'm receiving numerous emails and comments that are very educated I thought I'd better clarify.

I have not yet heard how Jimmie is today. I will post later this afternoon and evening with an update.

Thank you so much for your prayers!

Love,
Amber
P.S. Another reason the blood may not be making it's way from Jimmie's mouth to his stomach as easily is he really doesn't swallow very much yet. So he is simply not swallowing the blood.

The Good The Bad The Guessing

The Good:

Jimmie is not sedated any more.
He’s tolerating touch.
He’s tolerating small feedings.
He’s taking more breaths on his own.
He’s having less desats and bradys.
The Ventilator settings (pressure and oxygen)have been moving “down” not “up“.
Testing confirmed he does not have an anti-clotting disorder.

The Bad:
Jimmie is still bleeding.
The bleeding has not really improved.
He is still aspirating blood. (breathing blood into his lungs)

We are trying really hard to be thankful for the good right now as anything positive is encouraging. So lets thank God for the good.

We are really frustrated and somewhat discouraged that he is still bleeding. The reality of his situation is until he stops bleeding there is not much to be done. His Doctor is concerned and seems to just like to take it one day at a time.

What is most frustrating about this situation is we are stuck chasing Jimmie’s symptoms and unable to identify a cause. There are 3 typically un-invasive ways you might try to find a bleed that is leaking into the trachea and lungs.

1. MRI this cannot be done for 2 reasons. A. Jimmie is unable to hold his body temperature outside his isolette for any length of time. A few minutes maybe, but not much more than that. B. Jimmie is on the ventilator and cannot safely be extubated because he is still bleeding into his lungs.

2. CT Scan- there is significant research showing that preemies who have undergone a CT Scan have a greatly increased risk of brain tumors because of the radiation. This risk outweighs the dangers of his bleed right now.

3. ENT (Ear Nose and Throat Specialist) Their instruments for visualizing are way to big for Jimmie’s little body. They would cause damage that would do more harm then good.

So what we all really want is for the Doctors to find out where Jimmie is bleeding from and why and they have pretty much made it clear that is not possible. If this bleed were to become immediately life threatening I assume they would take more drastic measures to figure it out, but right now all of these measures carry risks that we and the Doctors are unwilling to take.

The Doctors best guess is that the bleed is deep in Jimmie’s nasal passages somewhere. I’m wondering where in the anatomy related to your nose, could you have a bleed that would drip only into your trachea, lungs and sometimes the mouth, but for the most part not go into the stomach? Because that is what is happening. Jimmie’s nose is very red and swollen presumably because of damage from the nasal cannulas and the feeding tube.

They are wondering if when they were messing with the feeding tube in his nose they caused a sore that is bleeding. There is a lot of back and forth going on between the Doctors, Nurses and us- Jimmie’s family. We are now affectionately being called- the “Family Doctors” by Jimmie’s Doctors and Nurses. We have countered that when the “event” happened Jimmie was obviously and suddenly in acute pain and then presented with respiratory distress. The feeding tube was put in his nose on Saturday. Nothing new was happening with his nasal passages on Monday when this happened in fact the feeding tube had been removed that morning and put back into his mouth! So to us a hematoma/vascular rupture of some sort makes more sense. Perhaps a blood vessel was weakened from the feeding tube. His nose was slowly swelling and then he received the blood transfusion which increased his blood volume and cause a rupture in the weakened irritated vessel. Jimmie felt the rupture when it happened and started crying aspirating the blood into his lungs. This scenario makes the most sense to me right now. Although I’d like somebody who is really good with anatomy to tell me where this bleed could be going into his lungs and not his stomach and that would not be at all visible by looking into his nose., but that could have been affected by the feeding tube. Mom keeps suggesting maybe the bleed is lower- like the tracheal area. The only counter to that is that in the crisis moment as they were intubating him- they carefully visualized that area. They saw blood pooling there, but not an obvious source. Perhaps it was too soon and they were working to fast . They were saving Jimmie’s life right then.

The Doctors and Nurses seem very reluctant to take the transfusion into consideration at all. They have not convinced me it’s unrelated though. I definitely would still leave that on the table as a possible contributing factor. And we are always reminding them of Jimmie’s sudden and acute distress. Which they always respond with - yeah, that’s just weird.

Anyway-- this is the kind of conversation that is going on constantly right now. They are doing 3 things right now to try to stop the bleeding.

1. They are keeping his Hematocrit in the upper 30’s (36 today) in the hope that this will help his body- in particular his liver to produce the clotting material for his blood. Preemie’s are underdeveloped in every way. So perhaps his liver is just not functioning quite where it needs to in order to clot this off.

2. They are putting steroids drops in his nose in attempt to reduce swelling. If his nasal passages are swelling and irritating or putting pressure on the place that’s bleeding they hope reduced swelling may help stop the bleed.

3. They are continuing the antibiotics and blood cultures in case some sort of bacteria has caused this.

Rachael said something this morning about them possibly giving him plasma which is rich with clotting materials. To my knowledge that has not been done yet though.

Anybody reading this blog who has any ideas please feel free to join us in trying to figure this out and come up with possible solutions. You just never know what a bunch of brains might come up with. (-: And I have no idea who all is reading this blog from around the world. Of course we have the up most respect for the Doctors who are taking care of Jimmie right now. They are- by far- the most educated and qualified. I think this really goes without saying. However they are honest about this being strange and abnormal. A lung bleed or an infection would be normal. It makes some sort of strange sense that Jimmie - who has been so extraordinary and unusual would have his first big issue be so UNUSUAL. However- we are really hoping this bleed resolves itself. If that’s the case this is much less dangerous than what is normal for micro- preemies- Lung bleeds and infections. His doctor stated yesterday that Jimmie’s journey up to this crisis had been nothing less than a miracle and really unbelievable.

We need a major miracle for Jimmie right now! If this bleeding does not stop. He is going to be in an increasingly serious and scary situation. Lord we ask for your mercy right now for Jimmie. Help this bleeding to stop! Give Jimmie’s caretakers wisdom and guidance to help him. Keep him strong. Protect him from infection and injury. Be with Jimmie and comfort him. And be with Rachael and Justin. Give them grace, wisdom and strength. Pray without ceasing everybody!

Love,
Amber

P.S. Yesterday I made it sound like Jimmie was having to recieve more blood because of his bleed. That is not true as of yet. They gave him more blood yesterday because his hematocrit had improved to a 33.2 after Mondays transfusion and they thought if Jimmie had pneumonia and a bacterial infection he would be able to fight it better if his hematocrit was closer to 40. This morning it was at a 36. They will watch this closely. Pray it keeps rising!

Small Update

Jimmie is still stable. There have been small improvements with his respiratory function, but he is still bleeding. The Doctors still don't know exactly from where or why. Keep praying! I'll give a much more detailed report later.

Love,
Amber

A Mystery

They did a "Gram Stain" test on the secretions and blood they are suctioning out of Jimmie. The test came back negative for any bacteria. In a sense this is positive news, but it just grows the mystery of what is wrong with Jimmie. They are still going forward with the blood cultures, but it could take a week or longer before we know if that has produced any answers.

The negative Gram Stain test points away from any sickness and infection and back towards- what they are calling "an event". This is what Rachael, Mom and Carolyn (the nurse who was there when it happened) have felt- or at least they have had a hard time reconciling the way things went down- with an illness.

If this is the case then Jimmie would not have pneumonia in his lungs, but rather inflamed lungs because of "the event". Not having an infection and pneumonia would be great news, but they are not ruling that out based only on the Gram Stain test. And they are continuing with the antibiotics.

Mom is wondering if something happened in his vocal chords or in his trachea that caused pain and bleeding. That would explain why there is not blood draining into his stomach, but rather into his lungs. This is all conjecture.

Mom said Jimmie is starting to act more like himself again. And they are just not convinced he is acting sick. But they are cautious about these conclusions.

It is starting to seem that we have a real mystery on our hands. The most upsetting thing is the bleeding has not stopped and Jimmie had to receive more blood (transfusion)this afternoon. They are calling it moderate bleeding. Mom is also wondering if the ventilator is irritating what ever happened and that is why the bleeding won't stop. If this is true- Jimmie is really in a hard place. He can't breathe without the ventilator because of the blood dripping into his lungs, but he wont stop bleeding because of the ventilator. Again-- this is all CONJECTURE.

I asked Mom to ask his Doctors if an ENT (Ear, Nose and Throat Specialist) could be brought in to look at Jimmie. They explained that all of the instruments are way to big and would be too invasive and would cause trauma to Jimmie. He is just too tiny.

NOTHING is really known for sure. This is extremely frustrating to us all- including Jimmie's Doctors. (My husband- trying for a little lightheartedness said, "too bad we don't have Dr. House on Jimmie's case!") (House is a t.v. show with a fictional Sherlock Holmes type genius doctor who figures out medical mysteries.)

Anyway- Jimmie really really needs to stop bleeding! Please pray for this. And pray for his Doctors to be able to figure this out. Pray that they would receive direction and inspiration from God! Continue to pray there would be no bacteria and infection in his body as well.

Contact everyone you know who will pray- direct them to this blog for specifics! We need more prayers than ever going up for Jimmie right now!

Love,
Amber

P.S. I thought I'd add Rachael is such a Supermom. The following is just to illustrate how involved she is with every aspect of his care. The doctor and nurse were discussing his nose today. They examined it a little more and found a scab in one side and a lot of swelling and inflammation on the other side. They basically feel his nose has been damaged/compromised by the nasal cannulas and possibly the feeding tube. They reiterated that most babies his size stay on the ventilator much much longer. They still feel nose issues are better than the issues that come with long term use of a ventilator. Anyway- they were trying to remember which side of his nose they first tried to insert the feeding tube and failed and which side it had ended up in. The nurse was trying to find this info in Jimmie's chart. Rachael has a little book that she keeps in Jimmie's room and records everything in it. She picked that up and told them all of the details related to this. They then found their notes regarding this and said, "yep- you are exactly right. That is is exactly what we have recorded here." Wow-- it's hard to communicate what Rachael and Justin are going through right now with this crisis. Pray for them as well. Pray that they have wisdom from God regarding their son so they can be his best advocates!

Jimmie In Serious Condition

Thank you all so much for your comments and prayers. Jimmie is very sick. He is in serious condition. His vitals are stable, but he is still bleeding.

Yesterday Rachael left Jimmie with my mom at the hospital and came to the studio and taught a dance class for the first time. I needed help and she thought it would be okay. It was refreshing for her. She got back around 3pm right as Jimmie was finishing his blood transfusion. They had justed started his feed when he started crying really hard. Rachael put her hands on him and it didn't help. Then his vitals started dropping and his hands and feet turned blue. His nurse started bagging him and hit the emergency button. So many people started working over him Rachael had to stand back away and just watch. They intubated him and started trying to figure out what was going on. There were 4 or 5 people working over him for hours trying to stabalize him and figure out what was going on. Justin, Rod, Kathy, dad(Jay) and I all got there as soon as we could. At times we were able to be back with the baby.

Rachael and Justin were/are terrifyed. We have been doing a lot of praying. Rachael has not really slept or eaten. She will not leave Jimmie's side. He is much sicker than he has ever been. His ventilator settings are higher than the night he was born and he is not taking any breaths on his own. He is not tolerating touch very well. They have him sedated and on i.v. for nourishment.

There is a lot of information, conjecture and guessing going on right now. The doctors really don't know anything for certain.

This morning one piece of news is a bit comforting. They are starting to think this bleed is not originating in his lungs. As sick as he is- they think he would be much sicker if it were a pulmomnary bleed. This morning his lung x-ray looked a little better with most of the haziness in the upper portion of his lungs. However they are still continuing to see bright red blood (indicating it is new blood) when they suction him.

They are suctioning blood from his mouth and throat as well as his lungs which makes them think this bleed is originating somewhere above his lungs maybe even from his nose. When everything happened yesterday as they were intubating him they could visually see blood pooling in his trachea area.

On Saturday they had moved his feeding tube from his mouth to his nose. They originally tried on one side and couldn't get in. They were not sure why. So they put it in his other nostril. Monday morning his blood gasses came back showing that he wasn't expelling his co2 well. They thought it could be his nose was irritated by the feeding tube and swelling. So they took it out, reinserted it in his mouth and put some steroid drops in his nose to reduce swelling. After that his next blood gas came back much better. They also had x-rayed his lungs yesterday morning and they were perfectly clear.

So their latest theory is this: there are 2 specific bacteria infections that can be present in the babies body at birth that commonly come roaring back when the preemie is about a month old. They are thinking perhaps one of these bacteria was present in his nose and when they messed around in his nose as they pushed the feeding tube down into his stomach- the bacteria was pushed way back into the back of his nose/throat and caused an infection which has caused the bleed and now pneumonia in his lungs. They have sent his blood to be cultured. We should know within a week if it was either of these two bacteria. They have started him on the antibiotic of choice for this scenerio.

He also recieved a blood transfusion yesterday because his hematocrit was all the way down to 23 that morning. It has been very hard for us to seperate what happened from his blood transfusion because he went down hill almost instantly not too long after they finished up his transfusion. The first theory the doctors investigated was that the higher volume of blood in Jimmie caused the PDA in his heart to pop open. This could have cause blood to back up into his lungs. So they called in one of the expert cardiologist who did an echocardiogram on Jimmie's heart. He said Jimmie's heart looked beautiful and that all of his ducts were closed as they should be. We have asked if it could pop open and then shut leaving no sign. They said this is extremely unlikely. That if the duct were weak enough to pop open like that it would not close that easily or quickly.

We've asked if it's possible that a small blood vessel burst because of the blood transfusion. Their answer is that they give numerous transfusions to micro-preemies during their stay in the NICU and that they have never had that happen. Some have said to us in 20 years there has been no report or suspicion of this. They execute the transfusion with the utmost of care measuring everything minutely. They take into account the babies weight, they recieve the blood over 3 or 4 hours. They are carefully monitored (blood pressure)the whole time. They are given a dose of lasix to counteract any extra fluid. There is probably more they do that I have not mentioned.

They are testing Jimmie's blood to make sure there is not clotting/anti-clotting disorder. They are keeping an eye on his potassium, sodium(electrolyte balance). So far all of these things indicate nothing. They are all in normal ranges. They have taken urine samples as well for testing.

The thing that has everyone mystified is that Jimmie was totally fine one second and the next he was basically- for him- screaming in pain. Then all of his vitals dropped. Oxygen sat. and heartrate. If he were developing a bacteria infection and pneumonia that would be an extremely bizzare presentation. Rachael continues to insist something happened suddenly that caused him to be in severe pain. The doctors have not really answered our question about that. They just don't know. I was wondering if perhaps bacteria could cause a blood vessel to burst and that Jimmie felt it burst and that was the pain he felt???

Jimmie is recieving some more blood as I type this so pray that goes well and he is safe. Pray hard for the doctors and nurses to have wisdom in his diagnosis and care. Two of the nurses helping with Jimmie yesterday were in tears as well as the Nurse Practioner. Everybody is doing everything they can for Jimmie!

So all of you- our prayer warriors lets get on our knees and fight hard for Jimmie.

Todays news has been a little encouraging. Pray the bleeding will stop and that all bacteria and infection will leave his body. Pray for him to have the breath of life in his lungs. This is Jimmie's first *real* bad time and unfortuantely it's pretty bad. He is so strong and such a fighter. We have to have faith he will get through this!

love,
Amber

Pray for healing!

So, there isn't much new to report, but I wanted to update everyone. First off, we still don't know why this happened. They are running tests on Jimmie, but have no answers yet. They initially thought that his PDA duct might have popped open, pushing blood into the lungs, but the cardiologist looked at his heart and said that it was structurally normal, which is great. The NICU nurse said sometimes in the NICU there are no answers, it just comes down to the fact that he is a micro-preemie, and these things happen.
Jimmie is in serious condition right now. His vitals are stable, but he is sedated and on the ventilator. They have him on about 40-50% oxygen. Right now, we need everyone to pray for Jimmie's life. He simply cannot start bleeding again. Pray that the bleeding stops completely. And, please pray that the doctors and nurses have wisdom to make the right decisions for Jimmie. Let God guide their hands and minds, and that they might be able to have some answers.
Right now the situation is not good, but as I said earlier today, Jimmie is truely a miracle, and such a fighter. I know that God hears our prayers and will give Jimmie strength to get over this obstacle. That's what we have to pray for now.
Thank you everyone for your prayers and support. Amber's internet is down, so I will update you all until she gets that up and running again.
Love,
Jennette

MAJOR SETBACK, PLEASE PRAY

Hi everyone. I just got a phone call from Amber and Jimmie's situation has taken a very unexpected turn for the worse. He had to have a blood transfusion today, and then they tried to feed him shortly afterwards. He began crying like he was in pain, and his oxygen saturation dropped rapidly, and he had to be reintubated. They did some testing and found that JImmie is bleeding from his lungs. That is all I know, and Amber will let me know as more information becomes available.
Please pray and contact anyone you know to do the same. Little Jimmie is a miracle, and a fighter, and we know that anything is possible through God. He can absolutely heal Jimmie as He has done throughout his life. Also, pray for the NICU doctors and staff, that God will guide them to make the right decisions for Jimmie. We also pray for Rachael and Justin, for them to be strong through all of this.
Lord, We lift Jimmie up to you right now, and we ask that you heal his little body. Please stop the bleeding in his lungs, and help him to start breathing on his own again. We know that through you ALL things are possible. We just pray to you for healing and strength for Jimmie.
Amen.
Jennette

Chillin On Mom

This is a video of Jimmie chillin on his Supermomma! (-:

Jimmie lost 1 gram today. That's not too bad since he's been gaining so well. Keep those fat prayers coming.

He has his first eye exam on Wednesday afternoon. His eyes will be dilated and the doctor will be checking to make sure he is not developing Retinopathy of Prematurity. Below is a brief explanation:

"Retinopathy of prematurity (ROP) is a disease that affects immature vasculature in the eyes of premature babies. It can be mild with no visual defects, or it may become aggressive with new blood vessel formation (neovascularization) and progress to retinal detachment and blindness. As smaller and younger babies are surviving, the incidence of ROP has increased."

Unfortunately this is pretty common in micro-preemies like Jimmie. So lets pray this is yet another area where Jimmie is exceptional.

Rachael said another thing to note is that with Jimmie's last brain scan they saw a Choroid Plexus Cyst. They assured Rachael these are completely harmless and absolutely nothing to worry about. Below is an explanation:

"The brain contains pockets or spaces called ventricles with a spongy layer of cells and blood vessels called the choroid plexus. This is in the middle of the fetal brain. The choroid plexus has the important function of producing a fluid called cerebrospinal fluid. The fluid produced by the cells of the choroid plexus fills the ventricles and then flows around the brain and the spinal cord to provide a cushion of fluid around these structures. CPCs can form within this structure and come from fluid trapped within this spongy layer of cells, much like a soap bubble or a blister.

It is believed that many adults have one or more tiny CPCs. CPCs have no impact on an individual's health or development or learning. The fetal brain may create these cysts as a normal part of development. They are temporary and usually are gone by the 32nd week of pregnancy."

Anyway-- Rachael and our whole family is a bit jumpy at the word "cyst" understandably. ( Rachael's daughter Gracie Anne passed away from a Cystic Hygroma and my daughter McKenna has had two Cystic Hygroma's removed) However the doctors have assured us this is not uncommon in healthy babies even ones who are not born premature. Most are seen on ultrasounds of babies inutero. Jimmie is working on his 29th week. It'll be interesting to see if this cyst does indeed dissolve by the time he is in his 32nd week. FYI it is NOT visible any other way than by ultrasound. You can not see it by looking at his head.

Jimmie is doing really great with the low flow. In fact- they are already starting to tweak the flow downwards. He was at 1 liter and they took it down an 1/8 today. This apparatus is the last step in his respiratory support. After the low flow- it'll be NO FLOW! (-: Nothing! Totally breathing and oxygenating on his own. Go Jimmie go!

Rachael will bring me the latest pictures tomorrow. I can't wait to see them!

Love,
Amber

Rocking The Low Flow

Jimmie is rocking the low flow cannula. He is doing totally fine with it. YEAH! They have moved his feeding tube to his nose now. Rachael said it's great to see his mouth free of that. She took pictures today of his new look. Hopefully I'll be able to post them soon.

He gained another ounce! Woohoo! He's a little over 2 pounds 2 ounces. These fat prayers are really working.

Rachael took most of the day off from the NICU and Justin spent the day with the baby. She was able to stay away until late afternoon. This is the first time she's really done that. I think it was good for her to rest and clear her head of the NICU for the day. Of course by late afternoon she couldn't wait to get up there and see her baby!

When Justin was holding Jimmie today his nasal cannula came loose and Jimmie pulled it the rest of the way out of his nose. He started destating and the nurse came in to help, but the cannula got pulled awkwardly tight and they couldn't get it back up to his nose right away. They put a mask up to his face while they were untangling it. Sheesh Jimmie. I'm totally sure you will be free of all tubes and wires before long, but you gotta be patient little man. (-:

A new thing to pray about is Rachael is pretty sure Jimmie is refluxing after he eats. He'll suddenly grimace and then suck kind of frantically. Reflux can be a major problem for preemies so lets pray this is not so for Jimmie.

Below is my mom's comment from under the last post. I thought I would post it in case some of you didn't see it.

"We do have a friend donating blood on Monday for Jimmie in case we need it. Thank you! But I have to say, my hope is that Jimmie will not need a transfusion.
Also, when I was in the NICU today, another nurse was helping Jimmie's nurse. She peeked her head into Jimmie's woom (room/womb)because his alarm was going off (high oxygen saturation-a good problem to have). She was simply amazed that such a little guy was on the low flow. It just does my heart good! I am so thankful to our Holy Father! Also, our TKM sessions are going quite well and I am convinced that this form of touch therapy is a wonderful tool given from above. I believe that it is one of the answers to prayer for Jimmie's amazing progress.
Love you, Jimmie Jim Jim, and Rachael and Justin, keep up the good work. Rest and Laugh! Goodness and Mercy are just following us around! (23rd Psalm)I love it!
with love,
Ma (Andrea)"

Thank you all for your continued prayers for Justin and Rachael and little Jimmie. We are so grateful!

Love,
Amber

2 POUNDS!

Rachael shot this video a week ago.



Yeeeeeeeeeeeeeeeaaaahhh!!! Go Jimmie go! He weighed in today at 931 grams which is 2 pounds and almost 1 ounce. So Aunt Leanne-- he made it! I know you said your prayer group was praying specifically that he would hit 2 pounds this week. Rachael is very happy with the last few days as far as his weight gain is going. So we will not stop praying those "fat prayers".

And today they moved him to the "low flow" nasal cannula. So far he is doing AWESOME. Rachael said it is so much more comfortable for his nose. Lets pray his blood gasses are still good when they check them again in the morning.

About donating blood. Quite a few people have asked me in person and with comments if they can help so let me explain. Jimmie needs O negative blood. Rachael and I are both O- but neither of us can donate for different reasons. Which is annoying. Rachael- because she just gave birth to him and she received a Rhogam shot. Me- annoyingly-- my body fat percentage is too low and I have a tendency to need iron. Oh brother! I know . . . If I could gain 10 or 15 pounds I would!!! This makes me annoyed with me. But oh well . . . It would be really great for Jimmie to have a donor that could keep giving for his needs. We have a good friend that has offered. When you donate specifically for a baby like Jimmie you have to have costly advanced screening on your blood and we've been told 80% of people test positive for a virus that is harmless except to babies like Jimmie. So lets pray if we have to go forward with this that it all works out. Anyway, we appreciate your interest and willingness to help.

Rachael and Justin have a new plan where once a week Justin takes a whole day with Jimmie and Rachael takes a lot of that day away from the NICU. Hopefully this will help Rachael. Thank you for your continued prayers for both Rachael and Justin as they are under such a strain as new parents. It's so hard to be living away from home as well. They left home in January and might not be back until the end of May. 5 months. WOW! They are so thankful for Justin's Aunt Karen and Uncle Kevin. They live about 15 minutes from the hospital and are providing a place for Rachael and Justin to live.

I am so excited tonight about both his weight gain and that he was doing so well today on the low flow! Praise the Lord!

Love,
Amber

Supermom

I posted this picture a few days ago, but I lightened it so you can see his face better. This was last Friday when I visited. He was looking right at me!

Today was a big day for Jimmie. He had his hematocrit checked- it was the same. So a blood transfusion is still hanging over our heads. Rachael is starting to feel like she wants to just have it done to get it over with and maybe he'll start gaining weight more consistently. But at the same time-- he's not really symptomatic, the previous (anonymous) donor blood pack he was using has expired and so it would be great if his levels would just come up! We have had a friend offer to donate and we may end up doing that. We'll see . . . Just keep praying it comes up!

He had his blood gasses checked and they are looking good.

And he had another ultrasound of his brain. His brain looks great and is negative for bleeding! This is WONDERFUL news!

They also adjusted his flow to 1 liter. This is basically equivalent to the low flow nasal cannula. So-- he may get moved to the low flow tomorrow. Pray that he does well with that and has no setback this time!

After his huge gain of 75 grams the other day. He lost 7 grams and he gained that back today. So now he is at 901 grams which is still just under 2 pounds. 1 pound 15.78 ounces. Keep praying those fat prayers! (-:

I'd like to ask some special prayers for Rachael too. She is just feeling a bit weary and overwhelmed with NICU life today. A lot of it is also normal new mom stuff, but compounded- of course- by little Jimmie's situation. She is exhausted. It could still be a couple of months before Jimmie can come home and today that just feels so overwhelming to her. She also knows the first couple of years of a preemie's life can be daunting. Just pray for her to take it one day at a time. She is a very good mommy- a "Supermom" for sure!!! She's very involved in every aspect of Jimmie's care and spends 8 to 10 hours a day in the NICU. Pray for her to be able to "let go" when she should, but also pray for her to have grace, wisdom and strength to be there advocating for Jimmie when it's needed!

We talked for a bit and she thinks perhaps she needs to turn one day a week completely over to Justin-- or something like that. Just so she can clear her head and get some fresh air so to speak. Justin is working a lot- pray that it works out for him to step in for Rachael and that she can let go when he does. (-:

Rachael is loving reading all of your comments the past couple of days. She is so grateful for your love, support and prayers. Even from strangers. It's too cool that people we don't even know are following and praying.

I am so grateful to you all! Family, friends and strangers -who are now friends to us! (-:

Love,
Amber

Dear Jimmie- Happy 1 Month Birthday!

Dear Jimmie,

Happy 1 month birthday! Way to go little man! You have accomplished so much in 1 month.

This is you the night you were born.


And this is you today!





you have gained almost 8 ounces in weight!
You have grown an inch and 3/4 in length!
Your head circumference has increased by a whole inch!

You achieved extubation from the ventilator after only 5 days.
You were moved off of the CPAP after 1 full day.
You have tried the low flow nasal cannula once. You fought hard, but were not quite ready. You are so close though.

After thirteen days you opened your eyes!

After 1 week you got to be held in your mommy's arms. Now you enjoy a few hours every day being held by your mommy and daddy.

You fought off an infection after your birth and have been healthy ever since.

Against the odds- your PDA duct in your heart closed as it should.

You have had 2 brain scans that have showed a healthy brain with no bleeding.

After 7 days you got rid of your umbilical line and had a new pic line put in, but you hardly used it and it came out after 5 days.

You have had only one blood transfusion.

You are now taking 16ml (just under an ounce) of your mommy's breast milk in your feeding tube every 3 hours.

You are digesting and pooping like a normal baby!

You've had your first bath.

At about 10 days old you started being able to lift your head enough to turn your head from side to side.

And you have received many valentines and cards. You have a bunch of little ballerina sweethearts!

You also have 69 followers on your blog and many many more who read it and pray for you everyday.

The doctors and nurses call you, "Their Mainstay", "Small But Mighty", "The Superstar", "The Rockstar". They say you are exceptional and that you don't know your gestational age.

The reality of your life in the NICU is that you are in the "valley of the shadow of death" but you fear no evil and God is with you! Your "Ma" (Grandma Andrea) recites the 23rd psalms to you often.
To us you are our miracle. God has touched you with His strength and His breath of life. Your mommy told me when you were born that she and your daddy "NEEDED" you to do really really well! Well- you have blown your mommy and daddy away. Exceeded all expectations. We are so proud of you and grateful to God. We are praying hard for you. You have a lot more work to do before you can go home. We look forward to more miracles for you!

Your Grandpa Rod, Grandma Kathy, Pa and Ma visit you and sit with you a few times every week. We all love you so much and can't wait until the day you can come home. Cole and McKenna cannot wait to meet you! Keep fighting Jimmie.

"I will lift up my eyes to the mountains;
From where shall my help come?
My help comes from the Lord,
Maker of heaven and earth." Ps. 121

Jimmie the Lord has truly made your little feet like hinds feet. You are walking on high places little man!

I'll love you forever,
Auntie Amber

First Bath! Weight Gain! Scary Time!

Jimmie gained 75 grams today! I'm so excited! That's the most he has EVER gained. So keep praying those "fat prayers" they are working. He is now only 3 grams away from 2 pounds!

The doctor may try him at 1 liter tomorrow on his flow. They are still watching and waiting on the whole transfusion issue.

Jimmie got his first bath today. Rachael and nurse Carolyn gave him a bath. Rachael said he loved it! His sensors were off so Carolyn talked Rachael through the signs and symptoms of a destat. He did great the whole time.

Rachael said they had a really scary few minutes this afternoon though. Carolyn was getting Jimmie ready to get out of his isolette so Rach could hold him and she pushed the moisture in his tube down away from his face- like she always does- and suddenly he started destating his oxygen pretty badly. Carolyn went ahead and put him in Rachael's arms thinking he'd come back up, but it just kept getting worse and worse. Rachael said his color started getting ashy. They put a forced air oxygen mask up to his face and he'd get better and then they'd slowly bring it away and his oxygen would start falling. Carolyn put him back in his bed and started trying to figure out what was going on. She said babies can get sick fast, but not this fast. She was listening to his heart and lungs (they sounded great!), she suctioned him... I'm thankful mom was there with Rachael- they were praying and talking to Jimmie. Nothing was helping and the only thing keeping him at acceptable levels was the mask they were holding on his face. Then Carolyn went to check the machine that is connected to his high flow nasal cannula-- and a CONNECTION HAD COME LOOSE! She said that had never happened to her before. Rachael was so grateful Carolyn checked that before anything drastic was done. Like going back to cpap or something...

Rachael said the whole time this was happening he was breathing and his heart rate stayed really steady. Poor guy had his nose plugged up by the cannula and wasn't getting good oxygen flow. He is totally fine!! And his nurse was so on top of things that he'll have no adverse affects from this. BUT it took Rachael quite a while to calm down.

I was freaked out just listening to her tell me about it.

Lets keep praying those "fat prayers" and pray Jimmie would continue to be strong and healthy and just pray for his safety too. His life depends on sensors and machines right now- and on his nurses. Carolyn is so great!

Love,
Amber

P.S. I get so many comments in person by people I see throughout the week on Rachael and Jimmie and the blog. Rachael misses you all. I try to pass things on to her, but she loves reading your comments as well. So don't be shy! A few of you comment pretty regularly. Rachael loves that!

Fat Prayers

Jimmie looking like he wants to take his cannula off.


Me visiting Jimmie.

They have weaned Jimmie's flow down to 1 1/2 on the high flow nasal cannula. They said he's becoming less and less dependent on oxygen. This is awesome news. I expect he may get to try the low flow again sometime soon.

They still have not made a decision on the blood transfusion. His numbers have stayed the same. And he's not really symptomatic. However the reason it is still being talked about so much is they think it might help him gain weight. They still feel he is really moving too slowly with his weight gain and maybe his body is working too hard making blood. But his retic. number (has to do with bone marrow) is like at a 3 something and they want it at 5 before they give him a transfusion because a transfusion lowers that number even further. So lets just really keep praying he starts putting on the pounds!

Send a lot of fat prayers Jimmie's way! (-:

Love,
Amber

P.S. If you haven't already- check out the video of Jimmie turning his head in my post below!

Small But Mighty

Jimmie has been turning his head like this on his own since he was like a week to 10 days old. Babies born at his gestation and size are not usually able to do that. Yet another thing the doctors and nurses are blown away by. The Nurse Practitioner called Jimmie, "Small but mighty!"

He really is just totally amazing and miraculous.

Rachael and Justin's pastor has been calling Jimmie "Samuel" ever since Rachael went into the hospital in danger of losing him. He's been calling him Samuel because we are asking God for him.

I think we could also call him "David". He is little David up against Goliath and he's victorious! He's winning so many battles against the odds, against even what is normal.

I looked up the meaning of Jimmie's name. In Hebrew it means, "supplanter". In English it means, "dependable and steadfast". So Jimmie has overthrown (supplanted) the normal. The nurses have even been calling Jimmie their mainstay (dependable and steadfast). I thought the meanings of his name were very cool- considering . . . (-:

Praise God!

love,
Amber

Jimmie Posing

Jimmie looking right at the camera!

I have some really cool video that I really wanted to post but I can't figure out how to get it off Rachael's camera. I'll have someone help me tomorrow hopefully. (-:

Jimmie is doing really good. He weighed in at a little over 1 pound 14 ounces. Go Jimmie go!

Rachael has produced so much milk so far she's filled up the NICU freezer. Go Rachael go! (-: Now I'm storing her milk.

Thank you for your prayers! More tomorrow with a new video!

Love,
Amber

Holy Father Fill In The Gap

Jimmie is still going strong! No blood transfusion order for the weekend. Yeeeeah! They may check his numbers again on Monday, but he’s not symptomatic so perhaps his little body is bringing it up on it’s own.

He gained 4 more grams today. I don’t have a conversion chart in front of me, but the point is he gained! Which is good because yesterday he gained quite a bit and he’s often loses the day after a big gain day. So keep packing it on Jimmie. We want see your cheeks get chubby and rolls in your legs! (-:

Rachael got some more good video and pictures today. So tomorrows blog should be fun! (-:

Keep praying for Jimmie to stay healthy, no blood transfusion, gain weight, deep breaths, no bradys and that he would feel God’s presence with him always- especially when his mommy and daddy are not there. Babies do best when they are not separated from mom early on. Unfortunately Jimmie did not even get the 9 months inside mommy. I know our Holy Father can fill in that gap!

Thank you so much!

Love,
Amber

Sisters

Rachael the bride!

Rachael and I are 14 months apart. In a lot of ways we act like twins. Sometimes we have arguments about who's memory is who's. Like-- Rach will say, "no I was the one that did that!" And then I'll swear, "no- it was me!" We shared a room and sometimes even a double bed growing up-- for 23 years-- actually. We danced together throughout our childhood, started a dance teaching business together and danced in a company together.

We share a lot and it’s wonderful. However I realized something recently. We now have both had daughters affected by Cystic Hygroma/Lymphatic Malformation and we have both had sons born prematurely. Unfortunately Rachael’s children have been affected by these things on a much more catastrophic level than my kids. Doctors and a Geneticist have looked at the details surrounding Rachael’s daughter Gracie Anne and her death and my daughter McKenna and they’ve told us it’s not connected. I’m sure we’d get the same answer about our sons. It’s easy to see differences in the details. But the fact remains- the bigger picture, is what it is…

We are both low risk for any complications. We are 28 and 27 years old. No smoking, drinking or drugs. And we are both in good (athletic) shape and have good diets. I don’t think I really have a point to this whole observation. I just thought it was interesting or weird . . I don’t know . . .

In the words of Forrest Gump, “Life is like a box of chocolates, you never know what you are gonna get. “ (-:

In my words- (-: life is hard and I could not cope without a relationship with God. I have seen some pretty heart wrenching and amazing stories blogged on the internet in the last 2 months. Some of which are now linked on this blog. And it’s pretty amazing to see His testimony in these stories. I believe life is about relating. With God and with others. The internet is the most awesome amazing invention for connecting us. I am very thankful for it!

Jimmie update later . . .

Love,
Amber

Answered Prayers

Answered prayers- yeah!!! Rachael held Jimmie today. She is feeling much better, as is Justin.

When she called Jimmie's night nurse (during her 4am pumping) she was very encouraging, respectful and sensitive to Rachael about some specifics and that really lifted Rachael's spirits about that issue. April-- thank you for the suggestion about an assigned(primary) nurse. Rachael is going to look into that option.

And Jimmie gained weight! He was 1 pound 13.8 ounces today. Still no blood transfusion.

Rachael and I had a wonderful time with Sandra- friend and mother to 4. Her 3 girls have taken dance from us since they were very young. Sandra treated us to facials at a spa down the street from the hospital this morning. Thanks again!!! What a great treat.

I dropped into see Jimmie quickly and he had a long awake time while I was there. He was looking right at me. He is so cute!! He was having trouble with destats and bradys while I was there and I got a taste of NICU life with a micro preemie. It's pretty stressful and hard. After his nurse came in and suctioned his nose he was doing much better though. All in a days work for these little babies- I guess. Whenever his nurse was re-adjusting his sensors she had to pull some tape off of him and he cried. Then he clearly got mad. It was almost funny. His little forehead
wrinkled up and his eyebrows pulled together. He sure is a fighter. I'm such a proud Aunty. (-:

To all of you who saw my comment on Jonah's blog and have offered words of support and prayers thank you. It is so encouraging and cool how the internet connects people for prayer and support.

We got a really cute picture of Jimmie looking right at the camera today. I'll post it this weekend.

I'm praising and thanking God for these answered prayers!

Love,
Amber

P.S. I added a new feature over on the right that links other blogs. McKenna's is there! (-: I'll link other related blogs that people have sent me etc...