Thursday, April 30, 2009

Stage 1 At Zone 2

Jimmie's eye exam went alright today. The Doctor said Jimmie's eyes are still very premature. He said Jimmie has Stage 1 ROP at a Zone 2. Stage 1 means that he see's a little something there (a faint demarcation line), but nothing that would require intervention or cause major vision problems. The Zone refers to where this is in his eye. They will have to watch and wait. It is also common for there to be disease of the vessels present which can often lead to surgery. The good news is that Jimmie does not have any sign of disease. Usually by 40 weeks diagnosis of ROP is complete. They will keep checking his eyes every week to make sure things do not progress to a point where they would need to intervene to save his eyesight. The Doctor is pretty optimistic for Jimmie, but not ready to say for sure yet. So his eyes will be examined again next Wednesday. Please keep praying for Jimmie's eyes! We are very hopeful that he will need no intervention, but we need to pray!

I am so bummed because last friday I didn't get to go visit Jimmie because I was sick. I still have symptoms so I'll have to miss my Friday date with my little man AGAIN! I'm going to beg Rachael for more pictures! Hopefully this weekend I'll have more cuteness to rest our eyes upon. (-:

Jimmie gained 10 grams. He is almost 4 pounds 10 ounces. Still gaining much too slowly though. Rachael gave him all bottles today, but the plan is to switch back and forth from breast to bottle every other feeding during the day. Jimmie loves nursing and so does Rachael. Rachael really wants to see him gaining again though so she is trying everything! I love how you guys changed it to "chunky monkey prayers" in your comments. LOL! Come on Jimmie-- we want you to be a FAT chunky monkey!

Jimmie is now 18 inches in length! Rachael said to tell Lucy (ballet student) that yes-- now he is the length of your American Girl Doll! (-:

Thank you for fighting for Jimmie! Jimmie's Warriors ROCK!

Love,
Amber

Wednesday, April 29, 2009

A "Thank You" To NNP Angela

Jimmie is doing better and better taking his feedings, but the medical staff is concerned about the plateau in his weight gain. They've decided they will be supplementing him with a fortifier in a bottle at some of his feedings. Taking just straight breast milk and working so hard for it is not serving him well in the fat making department. Now they are saying that not only do they need to see him taking all of his feedings by mouth before he can go home, he also has to start gaining weight at an acceptable rate again.

Come on little Jimmie you've got to chunk it up!!

To the anonymous person who commented about Carrie and her son-- we would love to join you in prayer for them! Please check back in when you can and let us know how they are doing. We will lift them up! And thank you for your prayers for Jimmie.

Rachael wanted me to give a special "shout out" to NNP Angela. Angela is graduating and will be leaving OPR's NICU. Angela has been with us through this journey from the night Jimmie was born. She attended his birth and was part of the team that intubated and stabilized him that night. Through the ups and downs she has cried with us and rejoiced with us. Angela- Rachael is so grateful for your support, investment and care in Jimmie's life. You are such an inspiration with your amazing communication, care and wisdom. The Gravitt's (Rachael, Justin and Jimmie) are going to miss you greatly and are sad that you won't be there to see him out the door. (Rach hopes to stay in touch!)

Jimmie's eye exam to check for ROP got bumped to tomorrow. Pray that it goes smoothly and that his eyes are healthy.

Thank you all for your continued prayers. I can never thank you enough!!!

Love,
Amber

Tuesday, April 28, 2009

All Tucked In

My Dad took a few pictures last night when he visited and did his TKM session with Jimmie. Jimmie was all cozy and tucked in for the night.



Jimmie-- open your eyes for the camera . . .


LOL! This one he looks slightly annoyed and he's totally looking up at his Pa.


Jimmie did really good last night and today with his feedings! He took 3 out of his 4 feedings from his bottle last night and today I think Rachael said they only had to supplement him twice! The OG tube in his nose has helped his eating situation immensely! He definitely prefers nursing over the bottle which makes Rachael feel good. It seems a month spent only breastfeeding has really helped establish that for Jimmie. The other day Mom said he did something so cute. He was supposed to be nursing, but instead he just decided he wanted to look into his Mommy's face instead. Mom said he just stared and stared at Rachael. Awwww so precious!

Keep praying your fat prayers. Jimmie was truckin right along on his 10th percentile growth curve and these past two weeks has fallen down to the 5th percentile. Hopefully with that tube out of his mouth he'll be able to get back on track.

Love,
Amber

P.S. Becky thank you for your comment. It really does seem like this part of the journey is so draining . . . I'm glad your sweet girls were such fighters!

Monday, April 27, 2009

Jimmie, TKM and The March For Babies

First of all I want to remind everybody that The March For Babies walk is this Sunday, May 3rd in the Kansas City Power and Light District.

14th & Walnut Kansas City, MO 64106
Walk Distance: 1 miles
Registration Time: 8:00AM
Start Time: 10:00 AM

Thank you to those of you who have already signed up online to walk with Rachael and I. You can also just show up on Sunday morning at 8am and register to walk. We’d love to have a big group! There is a “Family Teams” tent with seating and refreshments where we will meet. It does not cost to register, but they recommend a donation of $25. Those of you who have already signed up online can just print your "sponsor form" out and I think-- sign it and bring it with you. You should have a link to your form in the first email they sent you after you signed up. If you can't find this it's no biggie and you can just fill out the form when you get there Sunday.

This is Jimmie's Team page where you can go to donate or sign up!

http://www.marchforbabies.org/teams/651716

Also a very BIG thank you to those of you who have already donated online. As a whole- there has been over $300 donated. I’m so touched by those of you that have signed up for this and are out there raising and donating money in Jimmie’s name!

We are excited to be more involved with this organization. There are actually research grants for “outside of the box” therapy for preemies and babies with birth defects. My Mom has been working on a proposal for her TKM (The Ki Method) therapy! http://www.kinginstitute.org/ We are really hoping that this knowledge my Mom has may be able to prolong pregnancy in a mother who is at risk while preparing the baby to do as well as possible after birth. We have seen God’s hands at work with this therapy. So pray for Andrea while she starts the process of trying to raise awareness and resources for the use of TKM in these situations.

On that note- The Doctors were AGAIN reiterating today how unusual and amazing Jimmie’s journey has been. They talked about how they NEVER see babies who are barely 26 weeks on the nasal cannula. Jimmie was on the vent for 5 days, CPAP for 1 day and went to the High Flow nasal cannula on his 6th day after birth. He was only 25 weeks 6 days. And I have said this before, but we know that his ACTUAL gestational age is even a few days younger than the Doctors have put him. The Doctor also said that it is very rare that a 24 weeker would go home before his due date and they are pretty optimistic about Jimmie being home before then! They really are in awe and his NICU stay is talked about in miraculous terms by the medical staff.

What 24 weekers commonly go through are numerous spells with desats and bradys, brain bleeds, PDA (heart duct surgery), NEC (necrotizing enter colitis), infection, pneumonia, pulmonary bleeds, ROP, low muscle tone, problems holding their body temperature (even when they are at the 4 pound mark) and many other problems with major organs. Jimmie has had none of these things! (well- we’ll see about the ROP on Wednesday with his eye exam)

The medical staff has repeatedly commented on how Jimmie has been so atypical! They’ve said he doesn’t know his age. They even have gone so far as to question Rachael’s dates, but have noted signs in Jimmie that confirmed his age. (his fused eyes, measurements etc…) And as I have said before there is no doubt at all- according to Rachael. And to go back even further it was a total miracle and against all odds that Rachael was able to carry him as far as she did. The Doctors (based on experience) were not very optimistic about being able to hold off his birth for very long. Dr. Ridgeway said more than once how much we were beating the odds! Mom and others experienced in TKM did sequences (touch therapy) on Rachael as soon as she went to the hospital every 8 hours at the very least. Rachael also applied TKM to herself almost constantly. And since Jimmie’s birth TKM has been applied in some way at least once a day and more often than not- multiple times a day! So as I said we have really seen God’s hands at work with this therapy. And it is the biggest thing that is different in Jimmie’s journey compared to other babies. Believe me when I say that we know prayer and the number of people that have prayed is a factor, we believe it is all interconnected. Prayer- God- guides Mom’s hands and mind as she applies TKM. Prayer guided Dr. R’s hands as he put in the Cerclage. And we know quite a few of the Doctors and Nurses in the NICU are praying people! I am so grateful to God for all of this. Glory be to God!

Jimmie doing really well. He had a bunch of labs run yesterday and everything was great news! His blood gas was wonderful, his CBC was great, his hematocrit has gone up 2 more points! Woohooo! And everyone finally got the guts to try putting the feeding tube in Jimmie’s nose (NG tube). It went well and this is going to be much better for his eating by mouth situation! The only thing that’s not so great is that he’s had a hard time gaining weight the last week or two. It is directly related to all of his hard work learning to eat, not knowing for sure how much he gets when he breast feeds and the OG tube causing problems. The Doctor really does not want him to lose any more. He is around 4 pounds 8 ounces or so. We are really hoping this new situation with his NG tube will help with this. Pray your fat prayers people!!! (-:

Sheesh- Congratulations if you made it this far! I guess this makes up for short posts and not writing one yesterday at all. Thanks Mom for filling in for me!

Love,
Amber

P.S. I have put in an ORDER for current pictures of Jimmie- our cutie!

P.S.S. Thanks for the prayers for Kenna she's still fighting a nasty cold!

Sunday, April 26, 2009

Let not your heart be troubled

It's Ma (Andrea). I am helping Amber out tonight. She has a very fussy/sick McKenna baby! So mucho prayers for the Eames household.

I spent sometime with Jimmie this morning. He was very peaceful while I did a tkm session on him. I really enjoy my time with him. It is very special for me.
Jimmie had no spells today. I heard the nurse talking about Gravitt to another nurse and how well he is doing! I just love that!

Rachael and Justin are on their last leg of this nicu journey and definitely growing weary. Prayers for Rachael as she tries one more time to make her requests known to the powers in charge of scheduling. She is just so tired of telling and retelling their routine. Rachael has a fairly large list of nurses who know their routine and would really like to have one of them care for him instead of a new nurse every day. She is truly having anxiety about whether or not the nurse will let them do their "thing". It is frustrating.

Jimmie lost a few grams today. He is still hovering around 4 and half pounds. Rachael decided to get some bottles that breast-fed babies tend to like more per a suggestion from one of the night nurses. Maybe he will take the bottle better tonight. The goal is to get that feeding tube out and take all his feedings from either the breast or the bottle.

Rachael and Justin are really looking forward to going home. Being displaced since January has really been hard, but worth it. Jimmie, Rachael and Justin will all experience the homecoming together.

My prayer for Rachael and Justin is "Let not your heart be troubled." We have a very attentive Father!
Love,
MOM (Ma) Andrea

Saturday, April 25, 2009

Short And Sweet

This is going to be short and sweet-just like Jimmie. He's short and VERY sweet. (-:

I just got home from a VERY VERY long day.

Jimmie was awake, alert and more energetic today and did well nursing. Yeah!!

However he had a desat and a brady which hasn't happened for weeks and it has Rachael worried. The NP looked him over and can't find anything wrong, so hopefully that's true! He's not really acting sick which is Rachael's big fear at the moment. Pray for Rachael to "Peace Be Still" and for Jimmie to continue to grow strong and healthy!

Kristy, WOW! Thank you so much for your comment in the last post and everything you shared. I am so touched by your shared experience and I'm sure Emma and Gracie are friends! Everything you said will be so encouraging and special for Rachael to read. Thank you for your heart and your prayers.

Thank you all for continuing to fight for Jimmie!

Love,
Amber

Friday, April 24, 2009

The NICU Precipice

Last night was Jimmie's first night to take his feeds by bottle. He took one full feed by mouth. All the others he just sucked a little and clearly did not have enough energy. I think he did good to take one whole feeding though. It'll just take a bit for him to build the stamina for this. After trying so hard all night he was just plain tuckered out today. Poor little man. Father God please make Jimmie's little body strong enough to eat. Give him stamina to suck, swallow and breathe. Thank you for your power and might. We ask that Jimmie would be mighty!

Rachael was very weary of the NICU today. Some seemingly little things caused her tears. Remember back when Rachael first went on bedrest in the hospital and I likened the 3 1/2 weeks to viability to the "Precipice Injury" from the wonderful book- "Hinds Feet On High Places? Well- ever since Jimmie was born his journey in the NICU has definitely been another precipice. The Lord has been so faithful to us. Jimmie, Rachael and Justin have had Hinds Feet from the Lord. The last ascent, the last part of the climb can sometimes be the hardest. Rachael is very weary of this climb. Pray that she would be renewed and refreshed in body and spirit to fight the rest of the way to the top. She needs a second wind. Lord blow your winds of grace on Rachael and Justin. Strengthen them for this last leg of Jimmie's NICU journey. Fill them with peace. And help them to reach the top of this NICU Precipice soon.

Thank you all so much for joining me in these prayers! We have SO MUCH to be thankful for!

Love,
Amber

Thursday, April 23, 2009

Working Towards Home

Rachael talked with the Doctor that ordered Jimmie's MRI today. The Doctor basically just said that she observed how stable he is and that it's time to start wrapping things up and working towards discharge. An MRI is one of the things that has to be done for Jimmie, so she just thought she'd get it out of the way! Okay! WOW we are cool with that. The best possible explanation after a bit of a worrisome time because of the surprise of it. The Doctor also said the radiologist said his brain looked great so there was nothing more to say about the results.

They also put him on a prongless cannula today. They want to make sure his nasal passages handle that okay in preperation to go home on oxygen. He is on a half liter of flow at 50% oxygen.

And the Doctor wrote an order for the night nurse to give Jimmie some bottles to really start ramping up his feeds by mouth!

The theme for today was definitely working towards home! How awesome and amazing is that??! I have tears in my eyes just typing about it. I cannot wait for that day.

Lets start praying "home prayers"!

Love,
Amber

P.S. April thank you for your tape idea. Rachael is trying a few different things and is grateful for your experienced suggestion.

Wednesday, April 22, 2009

MRI Suprise

So Rachael was surprised late last night when she called the NICU to hear that an order had been written for Jimmie to have an MRI today. She went in this morning and tried to get answers as to why. No one could tell her- the NP and the nurses didn’t know and the Doctor who wrote the order wasn’t there. All preemies get an MRI before they go home, but Jimmie is not even close to taking all of his feeds by mouth- which has to happen before he goes home. Rachael had asked if he could receive an MRI early and they had told her- no it is better to have one closer to 40 weeks gestation. At that time they can better visualize everything they need to. So hopefully tomorrow she’ll talk to the Doctor that ordered it and find out why he ordered it so early. She was a bit “put out” about it. We thought he was supposed to have his repeat eye exam today, but no one had written an order for that. When Rachael asked about it they put him on the schedule for that next Wednesday.

The good news is his MRI showed a healthy brain! Those CPC’s (Choroids Plexus Cysts) they saw with his last head ultrasound were gone and he shows no signs of PVL- (Periventricular leukomalacia). This is the most common type of brain injury in premature babies. It is often the cause of cerebral palsy (CP), intellectual impairment, or visual disturbances.

I read a study of which babies are most likely to have PVL. Here is what I read, “Periventricular leukomalacia (PVL) occurs most commonly in premature infants born at less than 32 weeks' gestation (Jimmie was born in the 24th week.) who have a birth weight of less than 1500 g. (Jimmie was 690 grams) Many of these infants have a history of maternal chorioamnionitis. (That’s the infection that Rach had that he fought off after his birth.) So yeah-- Jimmie was faced with all three of those risk factors! And praise God he has overcome them! Go Jimmie go! (-:

The only thing noted was there was a very small amount of dried blood on the left side of his brain. The tech asked if maybe he had a grade 1 brain bleed, but Jimmie hasn’t. So the tech and the NP that talked to Rachael said this was not of any significance at all and was absolutely nothing to worry about. Jimmie had not had an ultrasound on his head since before his “crash and bleed” week. Believe me it crossed our minds that week that maybe he could be bleeding elsewhere as well. I still think that fiasco was connected to his blood transfusion. Anyway-- Rachael didn’t think it was enough to even classify it , but she will be talking to the Doctor tomorrow about it. We have been assured that it’s nothing to be concerned about.

They also visualized his nasal passages and did not see anything abnormal which is great news as well. There was uncertainty (during his crash and bleed) or worries (at least by me) that he may have had a tumor or cyst that bled, or a congenital abnormality of some sort. So hearing that everything looks healthy and normal is a relief.

Jimmie did not have to be sedated for the MRI. They fed him and then put this special vest on him that helped hold him really still and then they hoped he'd just fall asleep. It went well . . .

He couldn’t have his oxygen hood in the MRI so they cut the prongs of a nasal cannula and put that on him for oxygen.

And he took his first ride out of the NICU. He went down the elevator and through a connecting hallway to the medical building next to the hospital. So his first big ride. (-:

After Rachael talks to the Doctor tomorrow and asks all of the questions she has regarding this whole thing I’ll update you on those details.

Rachael is taking matters into her own hands and going to try to come up with a solution to try and help Jimmie’s feeding tube from slipping out of place. The tape the NICU is using does not work well when it gets wet. With Jimmie trying to feed by mouth he dribbles milk on to that tape on his chin and that causes his feeding tube to come loose. At this point most babies have an NG tube. (a feeding tube that goes in the nose and down into the stomach) Rachael is still very leery about putting anything in his nose, so she has a few ideas for different kinds of tape etc.. that may help this problem.

Over all just pray for Rachael that she would continue to have wisdom and grace advocating for Jimmie. It’s not always easy, often quite challenging and frustrating.

And keep praying for Jimmie! For his health, his safety and that he would get big and strong enough to eat by mouth.

Love,
Amber

Tuesday, April 21, 2009

A NICU Parent-Advisor

Jimmie is doing good except for that darn feeding tube is really starting to get old! It keeps slipping and hurting his throat. It's really sad to see him crying and upset because of that tube. He's just still too little to take his feeds by mouth. Even when he does nurse or take a bottle he still has to be given milk in his tube because he tuckers out before he can drink all he needs too. Poor Rachael is very weary of messing with this tube. So lets pray that Jimmie can get strong enough to take all of his feeds by mouth soon. And that in the meantime they find ways to make living with this tube more comfortable.

One of the Nurses is starting an organization in the NICU for parents. She herself had 30 week twins some years ago. She asked Rachael if she would be on the board as a NICU Parent Advisor. Wow! What an honor! Of course we all know Rachael's status as a "Supermom", but it now seems others at the NICU think so as well. (-: She really is an amazing mommy! She will be an amazing advocate for NICU parents!

Here are some pictures that Jimmie's Mimi (Amy) took today.






Thank you for praying for Jimmie!

Love,
Amber

Monday, April 20, 2009

A Little Stinker

Jimmie is growing! Look at his first onsie size compared to now!




Jimmie is doing better today! He hasn't been having high residuals and he's been more awake and energetic. He has had some poopy, but Rachael doesn't think that was it. She just thinks he's trying to adapt to this new schedule where they are asking more out of him. Sucking, swallowing and breathing is very hard work for him. So perhaps he was having some new schedule woes yesterday.

Yesterday morning when Rach came in Jimmie's nurse said, "I don't know WHAT we are going to do with your son! He was being a stinker in the night." (-: Apparently in the night the nurse noticed on the monitor he was really desating (low oxygen) so she went in there to see what was up and he had WRIGGLED OUT OF HIS HOOD all on his own! LOL! He did this twice!

Rachael thinks he may indeed be "a little stinker". The other day she put Jimmie down in his crib after he ate when she usually holds him for a couple of hours. She needed to make some phone calls though and you can't do that in the NICU. Well he was not happy that she put him down, Rachael said he threw a fit! NO not our sweet little Jimmie! LOL! Rachael thinks she may be creating a monster and spoiling him rotten by holding him so much. She's not gonna change a thing though! Poor little guy should STILL be in her belly.

He gained back the 2 ounces that he lost. He is 4 pounds 4 1/2 ounces!

Two more very good pieces of news:

1. He had his lab results today and his Hematocrit is on it's way back up! Yeah for "Crit Prayers"! And good for you Jimmie!

2. His oxygen needs have really dropped in that last couple of days. Rachael said it is really exciting. He's been at about 24% to 25% all day in his hood. That is just awesome!!

Rachael has 2 appointments next week with 2 different pediatricians so pray those go well and that she is finally able to find a Doctor for Jimmie.

Thank you so much for your words of prayer, care and support yesterday! It means a lot to us.

Love,
Amber

Sunday, April 19, 2009

Extra Prayers

Jimmie needs some extra prayers tonight. He had a feeding early this morning where he had 10cc's of residual left in his tummy. It was kind of yellowy- like it was full of stomach bile, which isn't normal for him. They adjusted his next feeding by leaving out the 10cc's and with that he had 7cc's left. They adjusted again and then it was 5cc's and at the last feeding he had only 2cc's residual. So it is moving in the right direction, but Rach is a bit anxious about it. He also lost 2 ounces. )-: And he's been VERY tired today, but not really acting sick. The Doctors and Nurses are not really concerned at this point. The NP feels like he may just need to have a big poopy. So lets pray those "poop prayers"!

Rachael and all Preemie parents live in terror of NEC (necroitizing enterocolitis). This is when part of the bowel dies. Obviously that is extremely serious. There do not seem to be any signs of this in Jimmie and as I said the medical staff does not seem too concerned. I sense Rach is having a bit of anxiety so pray for her. Perhaps it is the day, the emotions, the memories . . .

Pray for Jimmie!





Love,
Amber

In Honor Of Gracie



Gracie Anne Gravitt passed away in her mother’s womb Thursday, April 17th 2008. She was born Saturday, April 19th 2008 -- and spent 90 precious minutes in the loving arms of her parents Rachael and Justin, her Grandparents Rod, Kathy, Jay and Andrea, and her Auntie Amber. She was 1 pound 8 ounces and 10 and a half inches long.

Gracie Anne Gravitt is buried at the foot of her Great-Grandpa Gravitt. Her Grandpa Rod said his dad (who had 5 boys) always wanted a little girl. It seemed very fitting to lay Gracie to rest there.

Rachael wrote the following in September 2008:

When we found out how very sick Gracie was I knew inducing labor while her heart was still beating was not an option for me and I received the grace to continue on with my pregnancy. I decided not to go to work and try and be thankful for the time I did have with her. I received a vision from God of a white robe that was the garment of grace and the Lord was holding it out to me all I had to do was take it and put it on. I did, once I had it on it disappeared like water and I was wrapped in grace. I had to keep putting it on. He also told me to name her Grace because that is what he gave me.

“It has now been five months since Gracie passed away and I have good days and bad days. I am comforted to know that I will be with Gracie in eternity and this time apart is so short. I am looking forward to the day I get to see Gracie's face as God created it. I know I will never be the same. My little girl took a part of my heart and I feel her absence every day. What I can hope is that this experience will make me a better stronger person. That is what Gracie would have wanted. She lived so short a time but taught me so much.

Through Gracie God has given me this: that all we have to do is chose to love in all situations. Love our selves, love others, love and know we are loved. If we love, we don't fear, hate, have bitterness, self pity, anger, or envy. The by products of love are Joy and Peace! And I realized that I need to love. I did love Gracie and still do and it is beautiful that God gave me that. If we love in all situations only good will come of it. Nothing evil ever came out of love. When I start to have the negative emotions I remember that I love(ed) her. Just LOVE. This was the verse I used at our wedding it means so much more to me now.

“Love bears all things
believes all things
hopes all things
endures all things
Love never ends”

Much Love in our Fathers Name,
Rachael” Sept. 2008

Grandma Andrea wrote the following for Gracie's funeral:
“Rachael knew that Gracie was a girl because God told her so and He named the babe Grace. Her middle name is Anne. Guess what? That means grace, too. It comforts me that we have received a double portion of grace! She was God’s Grace! God only gives grace to the humble. Thank you, Rachael and Justin for being humble servants of God.

The apostle Paul spoke about grace often. In 1 Cor. 15:10, Paul said, “But by the grace of God I am what I am, and his grace toward me did not prove vain…”
Grace is God’s presence in our lives empowering us to be who He created us to be and to do what He has called us to do.

Thank you for sending us this message through little Gracie Anne. And I give thanks for the hope that our Father will make all things work together for good to those who love him and are called according to his purpose. I have hope that we will be better people because of Gracie’s life. And while Gracie did not get be all that she was made to be in this life, I have the hope that she will continue to become all God intended her to become. And for now, she has made a deep impact on us in a very good way.

Because Gracie’s tissues were so fragile and swollen, the nurse was not able to make the little clay molds of Gracie’s hands and feet. But it didn’t matter to me. I have the impression of her feet deeply set in my heart. And her little footprints have walked all over me and I have changed forever! It is good.
Jesus said, “Let the little ones come to me.” So Gracie Anne lept into Jesus’ arms. And He blessed her saying, “The Kingdom of Heaven belongs to such as these.”

Written by Gracie’s Grandma, Andrea EuDaly.
April 22, 2008”

Grandma Kathy arranged the above with Gracie's little foot prints at the bottom.



I remember driving home from the hospital that Saturday afternoon after Rachael had Gracie. I remember trying to not cry so I could see the road. I had been gone over night. When I got home I hugged and kissed my children and looked up into my husbands face and as the tears welled up I just shook my head and said, “I have no words…” I didn’t and I still don’t truly have words that come close to the reality of Gracie and my experience of her birth, but words are all I have that I can share. Rachael and Justin have a box of little keepsakes from the hospital, they have her ink foot prints and yes- they have pictures that we have decided will remain private. They also have a few ultrasound pictures which we will always treasure as those are pictures of her alive. And we have her spot in the cemetery. Obviously we hurt because we do not have her. We do not have Gracie. Not now . . . We have the hope and belief that some day we will be together. But until then all we have are memories and words.

There are a many memories that stand out for me from the day Gracie was born. Here are the ones I'd like to share:

I remember the picture of a faded leaf they put by Rachael’s door at the birthing center.

I remember waiting in the waiting room surrounded by strangers excited about babies who were being born that day. I remember trying to hide my pain from them.

I remember the ultrasound confirming Gracie’s heart was no longer beating. Seeing the stillness on the screen and seeing Justin’s shoulders slump as he shook his head. And then Rachael looked up and smiled at me through her tears and said, “it’s okay.”

I remember looking around at Mom, Dad, Kathy and Rod and thinking how joyful and exciting this day would have been. And hoping desperately for that experience with Rachael and Justin in the future.

I remember the disappointment that Gracie and McKenna- who were supposed to be only a year apart- would never play together.

This one is hard to explain, but I remember being happy for Rachael that she got to spend the time she did with Gracie while pregnant with her. But sad that the rest of us missed out. I wish I could have gotten to know Gracie even that much.

During the weeks we knew Gracie was dying and after we buried her I remember I didn’t want to leave my house. I remember feeling sick with anxiety about being in public and going to the dance studio alone (without Rachael). And then I remember being so surprised and grateful to God by the strength and grace I received right when I needed it.

I remember the pain and love in the eyes of the people in my life when they looked at me.

I remember the words of prayer, love and encouragement spoken and written by the wonderful people in our lives.

Most of all I remember Gracie. I remember how sad and how wrong it felt that there was no medical focus or concern on Gracie during delivery. I remember the moment she was born wishing that the Doctor or someone would have caught her instead of letting her slide into that big plastic container. I remember how she landed gracefully on her side and how beautiful and peaceful she looked.

I remember being filled with awe at the miracle of life in the moment of her birth. The feeling was much more intense and real then at the birth of my own live children.

I remember thinking how much bigger she was than I thought she’d be and how beautiful and precious she was. (She looked so much like Jimmie.)

I remember going out into the hall with Mom and Kathy after her birth where Rod and Dad were pacing and waiting. I remember their faces searching ours for any response or news. I remember Kathy walking into Rod’s arms, Mom walking into Dad’s arms while I slid down to the floor with my head in my hands and wished David were there with me.

I remember Rod and Dad going in to see Gracie.

I remember my Dad’s face as he held her.

I remember Justin’s face right after she was born.

I remember tears, everywhere, continually.

I remember Justin and Rachael giving her up and watching the Nurse walk out of the room holding her.

I remember the blanket they wrapped her in and the hat they put on her head.

I remember thinking that my cousin’s (Camilla) bridal shower was starting right when Gracie was born.

I remember that evening taking a walk with Dave and feeling that there was a wide chasm in between us of this thing I had just experienced while he was home taking care of our kids. I remember trying to use words to bridge the gap.

I remember the world looked, felt, smelled and sounded different.

I remember not being able to fathom that I would have to cook dinner that evening and clean the kitchen. I couldn’t wrap my brain around how life would go on.

I remember my son asking me why.

I remember knowing I would never be the same and being grateful and sad at the same time.

I remember Gracie’s tiny coffin.

I remember everyone’s faces at the funeral.

I remember walking into what would have been Gracie’s room.

I remember feeling close to God, in touch with the Eternal and knowing without a doubt that the Lord does draw near to the brokenhearted.

“My Grace is sufficient for you, for power is perfected in weakness.” 2 Cor. 12:9

We are sad today Gracie. We miss you so much. But there is also joy in remembering you today on your birthday. I will never ever forget being with you that day you were born. I will never be the same for looking at your beautiful face and being touched by your life. You will be in my heart forever. We miss you and we love you and we will see you again.

God is good.
Love,
Amber

Saturday, April 18, 2009

Sleepy Day

Jimmie is having a sleepy day and not really wanting to work as hard to eat by mouth. Hopefully it's because he's storing up fat and will have a nice gain at his next weigh in.

Jimmie is getting used to the whole burping thing. He has been pretty startled to be pounded on the back. His arms are waving around and his eyes are wide! Today though he seemed like he knew it was coming and gave some nice big burps!

Tonight Rachael and Justin are going with Rod and Kathy to purchase Jimmie's nursery furniture. How FUN!!! What an awesome moment for them to be able to start preparing for Jimmie's homecoming. We are planning some baby showers as well so family and friends stay tuned for invitations and details! (-:

Rachael hopes to get a meeting with a particular pediatrician early next week that she has hope might be Jimmie's Doctor. So pray that works out and that Rachael finds favor in her desires for Jimmie's care.

Pray for Rachael and Justin and our families tomorrow as we honor Gracie on her birthday.

Love,
Amber

Friday, April 17, 2009

Thankfulness

Rachael's (and mine and our family's) good friend Amy is here visiting from Canada. So Amy and I went up to the NICU this morning to see Rachael and Jimmie. They had taken the feeding tube out of his mouth so that Rachael could try breastfeeding without it to see if it would really make a difference. Then the Nurse realized she had forgotten to give him his supplements (iron etc...). So she had Rachael express a little bit of milk into a bottle and they put the iron in that and he tried his first bottle. He sucked it down so fast!! It was really exciting and encouraging to see how well he did with that. After he finished that little bit of milk from the bottle he latched on and breastfed like a champ- which was also very encouraging! It definitely made a BIG difference to have that feeding tube out of the way. The medical staff still seems to think he's too small to try all of his feeding by mouth though. So they put the feeding tube back in and Rachael will continue to breastfeed as much as possible with that thing *in the way* until Jimmie is ready to do all of his feedings by mouth. Pray that Jimmie will be ready very soon! I think he will be! Rachael said the Lactation Consultant has given her some options that really helped nursing him with the tube in his mouth. So that's good for now.

Jimmie's tummy has been much better that last couple of days as well so that's good news.

Justin and his Mom (Kathy) went to their home in Odessa today to clean. Kathy said it was surreal walking in there and seeing Rachael's Christmas stuff still out. When she told me that it just kind of hit me how unbelievable this whole thing has been. Rachael and Justin have been away from home for 3 1/2 months! They are both so strong and are coping so well with everything that has happened, but I imagine there will be a time in the future when they are home and trying to go back to some semblance of normalcy that there will be effects from this. Post traumatic stress or something of that sort. I mean with Jimmie still in the NICU and still not living at home I think they are still in survival mode. I also think the last two years for them- losing Gracie and almost losing Jimmie-- in some sense you are changed forever by stuff like that. Life will never be "back" to normal "so to speak".

They (we) are blessed with amazing family and friends and our Lord! That is what carries us through. Speaking of which Kathy has been doing Rachael and Justin's laundry for 3 months now. What a wonderful labor of love for them. And I've mentioned this before, but Karen (Kathy's sister) has opened up her home to Rachael and Justin ever since Jimmie was born. It has been such a haven for Rachael and Justin to be able to go to for sleep, food, showers etc... I know Rachael and Justin are so grateful.

Another thing I haven't written about yet . . . When Jimmie had his "crash and bleed" God gave us a miracle and we moved mountains! Jimmie's Dr. S. agreed to write and order for my Mom and Dad to do "The Ki Method" on Jimmie. Dr. S wrote it as "touch therapy". At the time nobody other than Rachael and Justin were allowed to touch him, so this was HUGE they got permission to do that. During Jimmie's bad week they worked on him numerous times from 9am to midnight. Now they are still working on him 5 or 6 days a week. Mom and Dad both do a session on him once a day and so does Rachael. Mom goes up in the afternoon and Dad goes late after he's finished working at 10pm or so. I'm sure this Ki method has contributed to Jimmie's unbelievable journey. Rachael and Justin are so thankful for this as well!

And since I'm on a roll with the "thanking" . . We are incredibly grateful to all of you our prayer warriors. They believe so strongly in the power of prayer and this gift you have given them is so amazing!

I'll leave you with some pictures. This is the absolute sweetness/Jimmie that you are all fighting/praying for.

Last night during Dad's Ki session Jimmie reached up and put his hand on his Pa's!




Dad took a shot through the porthole in Jimmie's hood.


These are some great shots that Amy took today!
Burping time!


Notice Jimmie has NO TUBE in his mouth! He still has some tape on his chin though.








Love,
Amber

Thursday, April 16, 2009

Jimmie The Fish

Jimmie gained 3 OUNCES!! Woooohooo! So he is 4 pounds 4 ounces! This is such awesome news because it means that he really is taking in milk when he nurses. And even with the extra work he is still gaining.

The lactation consultant came in today at Rachael's request and they have decided that working around the feeding tube in Jimmie's mouth while he is breastfeeding is no longer "working". If he is to really make any more improvements the tube needs to be out of the way. In most cases this would be when they would switch the tube to the nose, but that is NOT an option for Jimmie. The Lactation Consultant rarely if ever recommends bottle feeding, but she did today. If Jimmie can quickly learn to take the rest of his feeds by mouth they can get rid of the tube and continue working on the breastfeeding. The hope is that Jimmie will adapt to both breast and bottle and or switch completely back to the breast when that is possible. Pray that this is so. Rachael feels like this is probably a good idea at this point. It is the quickest way to get him in a position to go home. She will continue to work with Jimmie breastfeeding during his feeds throughout the day and they will work on bottle feeding when Rach is not the there.

Jimmie's tummy was much happier today. Yeah!!! Keep praying those tummy prayers.

Our long time friend Nellie created this wonderful piece of art and has gifted Jimmie with it. My Dad took a picture of it. See if you can spot Jimmie- the fish.



What an awesome picture of our little Jimmie. I cannot overstate how remarkable and unusual Jimmie's journey has been compared to most babies born in the 24th week. The Doctors and Nurse Practitioners have continually commented on it. We are so blessed and grateful to God for our miracle- Jimmie!

Love,
Amber

P.S. Nellie- I miss you. (-:

Wednesday, April 15, 2009

Wings Like Eagles

Jimmie is really fussy and gassy today. Rachael said he's been really sleepy and not eating as well either. )-: Pray for his little tummy. They are not really concerned, this kind of thing is pretty normal for any baby. But it's frustrating for Rachael because we really want Jimmie to keep up the good work in learning how to eat!

He gained about 3 grams- so not that much, but that may happen as he learns how to eat. He has to work harder and expend more energy and it's hard to know for sure how much he's getting because he's breast feeding.

The NP said they will discuss Jimmie in there Friday meeting with all of the Doctors- specifically his oxygen/nasal cannula issue. So possibly this weekend he could be put back on the cannula. We'll see what they decide!

Rachael is weary today. She has been working really hard trying to find a pediatrician for Jimmie that best fits and supports her and Justin's needs and desires for Jimmie's health care. Pray that she is able to find the right doctor. Being a preemie - Jimmie will have some intensive needs and his care will be very involved so of course Rachael and Justin are not choosing his Doctor lightly. And she is feeling the effects of the intensive schedule teaching Jimmie how to eat.

All in all Jimmie is doing good! Keep praying all of you warriors!

"but they who wait for the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint." Isa. 40:31

Love,
Amber

Tuesday, April 14, 2009

The "H" Word!

My prediction came true!!! Only much faster and in more dramatic fashion than I had imagined. The "H" word WAS mentioned TODAY! The NP said perhaps Jimmie might be able to go home in a couple of weeks!!! WHAT????? Oh my gosh!! I was in shock when Rach told me that. However there are many qualifiers along with that. It is in NO WAY a sure thing. It was just kind of thrown out there in relation to how well he was doing and there are a lot of "if this, then this..." scenarios being put out there. So I tell you this because it is indicative of how well Jimmie is doing, but not to get all of our hopes up that he might actually be home in 2 weeks. It seems that it is a possibility though, which is AMAZING!

The 2 main things that need to be worked out for him to go home are his eating by mouth and his oxygen situation.

As far as eating goes he is doing really well. They think he was taking as much as half of his feeding by mouth during his nursing sessions today. This is great news. However he still has a ways to go. He is only taking *half* of 3 feedings by mouth and he needs to take *all* of 8 feedings by mouth.

His oxygen situation is simply that he still needs it and he can't go home on the hood. He would have to be switched to a nasal cannula which we have been trying to avoid because of his nose issues. So he'll have to be put on a nasal cannula and watched for a while to make sure he's not going to crash and bleed again. That is not a scenario we would want to have happen to him at home. So in the next few days they may be trying him back on the nasal cannula again. Pray his nose stays safe and that this can work for him.

So Jimmie is being his little rockstar, superstar, small but mighty, mainstay, unbelievable, miraculous self!! Go Jimmie go!!!

Praise the Lord!!

Love,
Amber

P.S. I have to say- Ma, Pa and GGMa E. your comments on the last post were very entertaining! LOL!

Monday, April 13, 2009

Ramping It Up

Can I get a woooooah woooooah??? Jimmie is 4 pounds and then some...!!! Go Jimmie go! He has really started chunking up in the last few weeks.

I am so excited. I predict that in the NEXT few weeks the Doctors and Nurses will start saying the "H" word more often. "Home" is such a beautiful word! We'll see, Jimmie still has a few hurdles to overcome.

They told us when he was born that the goal would be to get him home sometime around his due date. His due date is May 28th. That is so UNBELIEVABLE to me. He is 2 months old and his due date is still over a month and a half away. When I think about that it just blows my mind. You really can't be born too much earlier than Jimmie and ever live to go home. Maybe 2 weeks earlier (at most) for a miraculous few.

So things are changing in Jimmie land this week! They are "ramping it up!"

Jimmie is going to start on a much more intensive schedule that will focus heavily on learning to eat by mouth. The NP (Nurse Practitioner) wrote and order today for Rachael to breastfeed him every other feeding during the day now. So Rach will be in the NICU from 9am to 9pm. This next phase of Jimmie's care and development will be a real marathon for Rachael because of her desire to breastfeed.

The NP also wrote a new order to have his feedings by tube go in over a 30 minute time period instead of 60 minutes. This will be a test to see how well his tummy can handle receiving milk at a faster rate. That is more true to how it is when being breastfed or even bottle fed. So keep praying those "happy tummy prayers"!

Jimmie's Hematocrit level is down to 28 which is not great. 40 is where they want him. But his Retic count is over 5 so they are very hopeful he'll bring his Hematocrit up on his own this time. If you are wondering(I was!)- "Retic" stands for "Reticulocyte". A Retic Count is the "number of reticulocytes (young red blood cells) circulating in blood, usually less than 1% of the total number of the red blood cells. Elevation of the reticulocyte count above 1% (reticulocytosis) is a sign of rapid red blood cell production."

Pray lots of crit prayers because we REALLY DO NOT WANT another blood transfusion.

So the grandparents are loving their new freedom to touch Jimmie. Grandpa Rod changed a diaper last night and Ma (Andrea) changed one today! Grandma Kathy said the Nurse made the comment that they were all going to fight over changing his diapers now, but later on it'll be the usual "thing you hope to avoid". LOL! I'll be shocked if my Dad changes Jimmie's diaper. If he does, I'll know for sure he's playing favorites. My kids are gonna be 4 and 2 this summer and somehow my Dad has managed to avoid changing either one of them! (-:

Here are 2 more shots from yesterday. He's just so CUTE!!





Love,
Amber

Sunday, April 12, 2009

Big Boy Bed

Happy Easter! I hope everyone has had a blessed day.

Jimmie is 3 pounds 15 ounces. He is holding his body temperature in his open air crib. Woohooo!!! So now his grandparents are able to touch him and help in his care.

Rachael and Justin went to church this morning and had Easter dinner with some of Justin's family. (the Mitchell side I think...) Everyone gave Jimmie gifts! Rach said they had quite a haul of stuff! Awww how fun!

Rachael said Jimmie is just pretty uncomfortable and fussy with gas. He has been like this for a couple of weeks now. So lets pray "happy tummy prayers"!

Here are some pictures my Dad took from today. Jimmie dressed up for Easter. His little onsie has a tie on it! LOL!





Jimmie's big boy bed!


And here is a little video clip I'll call "The Gas Monster". That's what Rach calls it when Jimmie gets all grunty, red and squirmy. Poor little guy.

video

Jimmie is doing so well!

Praise the Lord from whom all blessings flow!

Thank you Jesus for the power of the cross and the resurrection!

Pray for Rachael and Justin this week. Rachael felt her daughter Gracie Anne move in her womb for the last time April 17th and she was stillborn April 19th 2008. So a week from today we will honor and remember Gracie on her birthday. It will be an emotional time for us. We have already been going through the anniversaries of ultrasounds when we received the tragic and heartbreaking news of how sick she was. I personally don't remember much from this time last year. All I remember is Gracie and our grief. We were talking today about how none of us have a memory of Easter last year. We can't recall what we did... We appreciate your care and your prayers. We miss her so . . .

In Him. Love,
Amber

Saturday, April 11, 2009

Dear Jimmie- Happy 2 Month Birthday!

Dear Jimmie,

Happy 2 month birthday! You have had a very exciting 2nd month. You have worked so hard and accomplished so much.

This is you right after you were born.


This is you at 1 month old.


And this is you today!


Look at how you've grown next to your Rottweiler Puppy!







You have hit the 2 pound and the 3 pound mark this month. You are 3lbs 15oz! You have gained 31 ounces in weight!

You have grown over 2 inches in length!

Your head circumference has increased 2 1/2 inches!

You were rocking the low flow nasal cannula for 3 days before your “Horrible, No Good, Very Bad Day/week.”

You had what I’m now referring to as your “crash and bleed” and had to go back on the ventilator for 5 days. That’s the same amount of days you were on it after you were born. You were in serious condition Jimmie and both sets of your Grandparents, Mommy and Daddy and me- your Auntie Amber rushed to your side and prayed A LOT!! We love you so much and we are so proud of you. You were so brave and strong. We are very sorry about all that as it seems we have caused your nose to have some issues. The Doctors and Nurses have been doing their very best trying to help you breathe, but your teeny tiny little nose has been compromised. It started bleeding and you cried and inhaled the blood into your lungs.

After you were extubated you were amazing! You fought hard and achieved breathing without any positive air support blowing in your nose. You now hang out in an oxygen hood in your isolette.


And you just have some oxygenated air blowing in your direction when you are in Mommy or Daddy’s arms.


So now you have a sign posted on your isollette.


You have had 1 blood transfusion this month. You needed it, but it may have contributed to your “crash and bleed” so we are rooting (and praying) for you to make enough of your own blood from now on.

Your feedings have increased by 16 ml! You are now taking 32ml of your Mommy’s breast milk in a tube that goes in your mouth (NOT YOUR NOSE) and down into your tummy. And you have started learning how to breast feed! You love that special time with your Mommy and you are now working on it twice a day. You make improvements every time. You little eyes widen and you snuggle right in. You are becoming very aware and expressive Jimmie. Your Mommy can tell what you want when she walks in first thing in the morning.

The big news of today Jimmie is that you got moved to a BIG BOY BED! On your 2nd month birthday you have graduated to an open air crib. You are showing signs of holding your body temperature. So we'll see how you do tonight. This is so exciting!

You are now keeping your heart rate up and breathing without the help of caffeine therapy. You were weaned from that this month.

You had your first eye exam, but your eyes were still too premature to determine if you have ROP. So you'll have another exam in your 3rd month.

You also have started wearing clothes! You look like such a big boy in your tiny little onsies.


You have 80 (11 more than last month!) followers on your blog and many many more people who read it and pray for you every day.

You also starred in your first video and picture montage which was a big hit. It was set to music by your Pa. (Jay EuDaly)

That video has been viewed on One True Media and You Tube combined over 1000 times! Many of which are by your cousin’s Cole and Mckenna who can’t wait to meet you.



And by your Barkley cousins- who also will be very excited to meet you.


The Doctor’s and Nurses have reiterated this month how rare you are, how amazing you are. One said that your journey has been unbelievable!

I love praying for you Jimmie. There are a lot of people who love praying for you. We pray “fat prayers”, “crit prayers”, “poop prayers”, “oxygen prayers”, “eye prayers” and lots more! Jimmie, you know now the power of prayer, I’m sure you do! I know you feel them as you are completely covered in them.

Jimmie you have fought and won many battles this month and since the night you were born. You still have more work to do before you can come home.

"Blessed be the Lord my rock, who trains my hands for war, and my fingers for battle; my rock and my fortress, my stronghold and my deliverer, my shield and He in whom I take refuge.

The Lord is your refuge Jimmie! He is your stronghold and your deliverer!

I love you very much and cannot wait for the day when I can touch you. I love coming to visit you to see your sweet face and to see your Mommy and Daddy’s faces when they look at you. Your tiny little room is so full of love. I also love coming to visit you because you are awe inspiring. I’m in the presence of real live miracle when I’m with you. Jimmie you are our Lion and our Lamb. You are both Fierce and Sweet. You Fight and you make Peace. I’ve never had a hero before Jimmie, but now you are most definitely mine!

Love you forever,
Auntie Amber.

Friday, April 10, 2009

Big Gain!

In the last 2 days Jimmie has gained 6 ounces!!!!! WOW WOW WOW!!! He is 3 pounds 14 ounces. Go Jimmie go!

I went and visited him today and he is just so doggone cute I can't stand it!

Jimmie did so good with his second nursing session today. He really was sucking, swallowing and breathing for quite some time! Next week they will really start trying to feed him by mouth at many more of his feedings. Two things he needs to be able to do before he goes home are eating and holding his body temperature. We would love to see him weaned of his oxygen too because he can't go home in the hood. He'd have to go back to the cannula that has nasal prongs and we really don't want that because of his nose issues.

Here are some more of the pictures Nate took:







Tomorrow is Jimmie's 2 month birthday and I'm preparing another summary post for his 2nd month! He has come so far. He is truly amazing and miraculous. Thank you Lord!!!

Thank you all for your prayers. We are so blessed.

Love,
Amber

Thursday, April 9, 2009

Uncle Nate's Visit

Jimmie gained 7 grams today. Not great, but at least he gained. Over all he's doing really well! Uncle Nate (my bro) went to visit him with Mom today and took lots of totally awesome pictures! Yeeeeeeah, we all love Jimmie pictures!

Sisters anecdote- So ever since I can remember Rach and I- without knowing it or planning it, would dress the same and sometimes do our hair the same. We would do this when we both lived at home and it continued even as we've lived apart. We'll show up at the studio and look at each other and smile. Well lately it's been very "hit or miss" whether Rachael or I put on make-up or do anything with our hair more than just throwing it back in a tangly pony tail. Sign of the times in our lives I guess. So as I looked at the pictures Nate took today I started laughing. Rachael looked totally cute today. She had done her hair and put on some make-up. Guess what??? I got all inspired and put on make-up and did my hair today too. The thing is we did our hair the same way and we have the same shirt on! LOL!

Here she is.


Here is a blurry "do it yourself" picture of me.


So weird. And wonderful.

Rachael doing her Mommy thing.


Jimmie's prints.


Jimmie's life on a screen. The top number is his heart rate, the middle number his respiratory rate and the bottom number is his oxygen saturation. Those numbers look good Jimmie jim jim. (-:


Jimmie's cute little feet. That red light is the pulse ox monitor on Jimmie's foot. That's what measures his oxygen saturation levels.


What a handsome little man! His eyes are pretty swollen from yesterdays eye exam though. )-: They had to pry his eyes open and hold them that way for a while.



Jimmie hanging out in his hood.


Those are great pictures Nate! And there are more that I'll post tomorrow.

Rachael said Jimmie's nurse today thought he was at least a week older than he is because of how well he's doing with breast feeding. Good for you Jimmie!

Thank you for your prayers!

Love,
Amber

P.S. Jimmie is 33 weeks gestation today!