Monday, July 30, 2012

Decisions....

It was discovered Friday that Mylah has a respiratory issue which caused her episode that returned her to the ICU last week. Today we were informed that she will require a tracheostomy & support from a ventilator 24/7 in order to maintain a open airway & keep her breathing. It's a very sad development for us because Mylah seemed to be recovering well.
Today was very, VERY, hard hearing about this because Mylah never had any issues breathing before that would have prepared us for what we were told today.

Just pray for us as we have some life changing decisions to make in the coming days. Continue to pray for Mylah, her strength, & her recovery. Pray that the LORD strengthens her airway so that this may be a temporary problem. Pray for our family, Pray that we are guided to make the right decision.

I'm in too much pain to go into full details. Please pray for my strength.

Wednesday, July 25, 2012

Photos...

Here are the photos that Mylah's Auntie Sherry shot before her heart surgery.

Sherry Kruzman is an awesome photographer and I can't wait for the next session we have with her!
All because 2 people fell in LOVE.....

Bracelet made by her Aunt Danielle P. (Mylah's hand is covering up the "H")

Daddy's Little Sunshine... 

Those beautiful eyes....

Mommy's little Butterfly..

Perkins Family
1 Samuel 1:27-"For this child I prayed; and the LORD hath given me my petition which I asked of him" (KJV)


Update on Mylah....

Last night Mylah was transferred back to the PCTU (Pediatric Cardiac Thoracic Unit). Her oxygen levels all of a sudden started to decline.  The situation was EXTREMELY scary and honestly I thought that was the last time I would see my daughter alive. She turned very blue and it was obvious that she was having trouble breathing. My heart still aches at the visual images that are now etched in my mind. No parent should ever have to go thru having the hospital call a "Code Blue" on their child.


Currently, she is stable & back on the ventilator, Versed & Morphine.  She is fighting the tube (which I'm told is good). She has a fever of 102 so they are working to bring that down.  There are 3 possibilities as to what happened, but the staff here is very baffled because other than her dependence on the nasal oxygen she seemed to be progressing well and then all of a sudden came this rapid decline.

Mylah could possibly have a viral infection which they are trying to determine by doing blood cultures. She's been given Tylenol for her fever and they've unwrapped her and placed a cold towel on her head to try and cool her down.

Possibility #2 -She aspirated her feed from earlier yesterday. This may have blocked her airway and created this issue last night. She also hadn't had a bowel movement since Sunday so its apparent that she's having trouble digesting her food and over the Sunday we noticed a lot of reflux in her feeding tube.

Last and the one I'm praying it's not- Her Trisomy 18. There is a small possibility that because of her T18 her brain may not be telling her body how to breathe properly. I'm not claiming this one.

Due to the fever I'm praying the infection is the source of our current issue.

Nevertheless, we must start all over.

The words that I need to say are really stuck because my thoughts are very cloudy right now so I won't try to type of this long drawn out blog entry today.

Simply stated... we need all the prayers we can get.

Thank you all!!

Tuesday, July 24, 2012

A Cruel World....

My baby found out early how cruel this world could be.

If I had listened to the advice from the cruel world I wouldn't be a mother. I wouldn't be watching my baby recover from heart surgery because "she was gonna die anyway" remember? So what was the point of operating.

The point is that GOD has his hands all over her. He designed her the way HE wanted her to be. He picked me because HE knew I wouldn't listen to the advice of the world and kill the blessing that GOD had in store for me.  He was preparing me my whole life, but I didn't know it. It's only now that I am able to reflect back on different signs that he's shown me along the way, but because I wasn't aligned with him I wasn't able to recognize what he was trying to show me.

If I listened to the cruel world I wouldn't be able to say that my faith has gotten stronger because of her. I wouldn't be able to enjoy her laugh, her smile, those BIG OLE eyes, those clenched hands, or rocker bottom feet.  Yesterday, I looked into her eyes and was mesmerized by her beauty & the beauty of her life. As I rub my finger across the incision on her chest I can't help but be thankful and reminded that GOD has control and has always had control.  He has had control over my life since the beginning. He had been waiting on me to allow him to show me all the things he has in store for me and Mylah.  I thank him for being so patient.  Each day I am reminded of how powerful and loving he is. How forgiving he is.

He continued to breathe life into lungs that were written off as junk just because of an extra chromosome. He continued to pump blood through a heart that was deemed useless because of a few holes. No matter how long Mylah has on this earth, it's one day longer than the cruel world ever gave her and it's all because of HIM.

So today I Thank HIM, for his love, his covering, his understanding, his patience and for being sovereign. I also thank him for continuing to allow my daughter to bless my life. I thank him for keeping her here 4 months longer than people said she would be here. I thank him for leading us to where we are today. There is nothing to hard for my GOD.

‘Ah, Lord God! Behold, You have made the heavens and the earth by Your great power and outstretched arm. There is nothing too hard for You.  
Jeremiah 32:17 (NKJV)

Saturday, July 21, 2012

2 Steps Forward.... 1 Step Back.....

that's the way I'm feeling right now about Mylah's progress.  She's out of the NICU but it seems like we've had more setbacks in the moderate care ward, than in the ICU. That's how it seems.


I remember during the consults with the cardiologists, we were told that it was highly likely Mylah would be in the ICU for at least a month.  She had surgery July 5, 2012 and was discharged from the ICU to Moderate Care on Tuesday, July 16, 2012. Almost 2 weeks and she was off the ventilator. Progress...  Progress... Progress... and it takes time.  That's how I have to look at it. I have to continuously remind myself that its better to have slow progress and a few set backs than to have fast progression and she end up right back in the hospital.


This new moderate care floor is very different than the PCTU (Pediatric Cardiac Thoracic Unit).  The sense of "urgency" here is sort of diminished. It's a transition not only for Mylah but for me as well.  Alarms beep a little longer, response is a little slower (depending on the nurse). You are looked at as "self sufficient"if you can change a diaper, bathe your baby and they even encourage you to hold your baby.  I guess this is to prepare for the next step down and eventually home.


Mylah's recovery is a process. We were so excited to leave the PCTU because things were going "good". Mylah's 2nd day in mod care proved that maybe she was pushed a little too much too fast. She went through withdrawals because she was no longer being given morphine. The irritation that she showed broke my heart. She couldn't be consoled. She didn't want to be touched, held, or rocked. Nothing could really soothe her. Wednesday night she had to be given what is called breakthrough Morphine. I can't imagine what a child who is born with an addiction goes through.  


Then I was told that an x-ray of Mylah's chest showed some atelectasis. Her oxygen needed to be changed from full 100% oxygen off the wall to a blender that mixes air flow with oxygen. This would help Mylah breathe deeper so that she could attempt to break up the atelectasis in her lungs.  Her diuretics of Diurul and Lasix had to be increased and given by IV to help shed some of the water on her lungs because her breathing was a little too labored.


All of this in a matter of 36 hours so you could understand my feelings of being extremely overwhelmed, scared, defeated, and upset. I think we were so excited about leaving the ICU that we we got ahead of ourselves. But what parent wouldn't? The struggles Mylah had on Wednesday showed me that I needed to slow down and take each day as it was.


As a mother it is so hard to see your 3 month old baby struggle to recover. Although Mylah is doing better than most expected she still has some hurdles to get over. My prayer is that she can go home the same way she came in, with one tube; her feeding tube.  If she does have to go home on oxygen I pray that it's only for a short time and that we won't have to return to the hospital anytime soon.


We haven't been given a estimated time as to when we will return home. I didn't think we would be here to celebrate Mylah's 4th month birthday (Tues) but we are. The party will go on as usual. She's still here defeating odds, just because she's in the hospital doesn't mean we won't celebrate.  There were people who didn't think she'd be here. There were those who said I was in denial about Mylah's condition. There were some who said she probably wouldn't make it off the ventilator.  There is so much to praise GOD for.



It's a continuous emotional roller coaster being here. You try to humble yourself each day. You want to celebrate the advances of your child, but sometimes I feel bad. As Mylah progresses another child regresses and I can't help but be reminded that it only takes a minute and I could be that parent. Not all these children have the support system that our family has been blessed to have. Not all families are local. Some come from other cities, states, and countries. It gets expensive living out the hospital. Whereas I could run home in 30 minutes, another family can't do that because they are from Alabama. Home for us isn't far away but for others it is. I truly believe that love and support also makes a huge difference in the recovery of these children. 

We often forget to thank GOD for things that we have that we most often take for granted. 
If you have a job, be thankful; a steady income, be thankful; food in your refrigerator, be thankful; a family member who will fill in the gap for you, be thankful; HEALTH INSURANCE, be thankful; 

These families exhibit so much strength. I can't imagine being away from Mylah during this time. The days when I must leave, Mylah is watched by my sister. I am blessed to just to have her. For a little while I don't have to carry the full worry regarding her care. I know if decisions need to be made she can make them.  GOD has blessed me with her to fill in that gap. 



We ask that you continue to pray for Mylah. Pray that her lungs clear up, Pray that she regains her strength, Pray that she can be weaned off the Methadone and Valium, Pray that she gains weight, and please continue to pray for the strength of our family and friends.


Chilling in my bed

Wednesday, July 11, 2012

Mylah's Progress....

Mylah is making progress...they turned off her Nitric Oxide yesterday so that's one machine that's gone! Her pulmonary artery line was just removed. The doctors will monitor her for bleeding & if she's ok her chest tube will be removed today as well. Which will be another significant milestone.
Her ventilator settings were lowered today & they will continue lowering. They will turn the ventilator off to see how she tolerates breathing on her own & depending on how she does she may be able to have the tube removed tomorrow!

This morning a representative from the hospital came & said they will be shooting pictures & video tomorrow in the ICU. She asked if it would be okay for them to shoot Mylah. I signed a waiver allowing them to use her images. I can just imagine seeing Mylah in a publication or seeing her on tv in the bed as a camera pans past her & that University of Michigan Health System jingle playing! Mylah will need to prepare for her big day!

Sitting in this hospital each day is very hard. I spoke to a family yesterday who has been here since June. We could identify with each other in that even with what our relatives are going through, which is serious, walking these hallways you always find someone whose situation is worse than yours. I found myself saying "Thank You God" as I was reentering the hospital from a brief visit to the parking garage. Thanking him for Mylah, for her life, for guiding us to this hospital, & for the people that we are encountering who are also traveling their own journey.

Each day I speak to a family, I hear their pains, see their struggles, & witness their tears. They become a source of support for us & us for them because they can relate. They too share in your pain & anticipation. They know what a sense of relief it is to have blood pressures stabilize. They too anticipate moving to the 10th floor; it means progress. They understand that empty feeling you get in your gut when the machines start to blare & the doctors & nurses suddenly appear with concerned looks on their faces & have to bag your loved one.

This place is a serious dose of reality. Each day as we move forward towards going home, another family is preparing to start this leg of the race. The finish line most days seems so far away. There are a number of hurdles to overcome & some have more than others. Each time I think I've seen the smallest baby, the surgical team wheels in another one smaller or younger than the last.

Everyone in these walls needs GOD & it's amazing that he is covering so many, answering prayers, guiding the hands of these surgeons, giving peace to those who are suffering, healing those who are sick, giving strength to those who are weak, & comforting those who have lost.

We are very thankful for all the prayers & support that we have received! Please continue to pray for Mylah & all those who enter these walls.

Saturday, July 7, 2012

Strong Little Warrior.....

That's what Mylah is. Each time I feel like I don't know how much more I have in me, I look at her and I'm reminded that if my 7lb 1oz 3 month old baby girl can endure a heart surgery then surely I can handle anything that comes my way.

Mylah's heart defects were repaired and now she is on he road to recovery.  Mylah is a little fighter.  Seeing her with all the machines and the tubes is heartbreaking, but I know it's just temporary.  I expect her home in no time. I can't wait for the day I get to hold her again.

Mylah is in what they call the "Bay" it's a circular open room with other pediatric cardiac patients. It's a dose of reality. While people are going about their everyday lives; shopping, working, going to school, here there are families; mothers, fathers, sisters, grandparents who have set up living quarters in the ICU. Rotating bedside shifts next to their loved one. Praying for a speedy recovery. Decorating their rooms/windows with items for their relative.

The "bay" is also full of noise.. beeping from machines monitoring her blood pressure. Pumping noises, from the machines that automatically dispense medications through syringes the size of  turkey basters (Mylah has 10). Humming from the ventilator that is breathing for Mylah as she rests. Then there is the periodic alarms that blare from the machines when something is either too high or too low. The "bay" is not a fun place to me. It's completely overwhelming. The reality of what's happening in this large circular shaped room causes you to step back and be thankful for what you've been given. Although, I know Mylah's issue is severe there is always babies that are worse than her and I have to remind myself of that.

No parent wants to be in this room. No child either. Each patient has been operated on and most aren't any bigger than Mylah, some actually seem smaller.  Each child here is a fighter and is stronger than I could ever be. I'm really glad that the full repair has taken place. I know I couldn't have handled this situation twice.

Today (7-7) she's being weaned off her her paralytic medicines. She coming out of her sedation and they are slowly lowering her dependence on the ventilator. She's been moving and getting excited when you talk to her or touch her causing her blood pressure to increase a little. She still must rest. She's a little swollen but I actually thinks she looks the size that a 3 month old should be.  Each time I look at her I am in awe of her determination and strength. I admire her drive and I just can't believe the things she's been through in her 3 month life so far.

Now we are on the road to recovery. I ask that you continue to pray for our baby and her strength and pray for us as well.

Thank you all for your prayers, phone calls, text messages, words of encouragement. Mylah has touched so many lives thus far and I'm pretty sure she has much more work to do in the future.


Mylah & her wolverine... 7-7-12
"GO BLUE"


Sunday, July 1, 2012

Psalm 32:8....

"I will instruct you and teach you in the way you should go; I will counsel you and watch over you" (NIV).......

"Don't ask GOD to direct your path if that's not what you mean....when he shows you the way to go don't ignore it... I learned that today. I hear you LORD." 

This is what I posted as my Facebook status yesterday after leaving the hospital for what we thought would be a day of pre-op appointments for Mylah. We arrived at the hospital for our 8:45 a.m. appointment. As usual she was weighed and measured. Initially, we were told that she would have another echo cardiogram but that she would have to be sedated. I was really worried because Mylah hasn't had to be sedated for anything thus far.  Right before her echo we were told that sedating her wasn't something that her cardiologist wanted to do. What a relief! Although, she tossed and turned throughout the entire procedure she was fully aware of what was going on and she made sure that we knew how upset she was!  She also had her usual EKG. During her cardiology consult we were told that her echo images were pretty much the same. No closures of the holes... so nothing would change the plan that we had for surgery. We were given a list of other things to do to prepare for her Thursday surgery; labs, pre-surgery check in, and we would meet the surgeon who would do the pulmonary artery banding (PAB). 

 

Mylah was pretty irritated the entire day. She had been poked and prodded on since that morning. Our last appointment of the day was to meet her surgeon.  Our family and friends had been paying for this person. The one who would operate on Mylah. We wanted the person to be GOD fearing, compassionate, understanding, and most of all someone who would treat Mylah like the precious baby she is. 


He entered the room where we waited; waiting to discuss what would happen during Mylah's Pulmonary Artery Banding. How would he operate? How long would it take? What was the estimated recovery period? That's what I wanted to discuss. 

 

He wanted to discuss options..... I thought "Options?" I thought we'd already made our decision. I really wasn't in the mood to discuss options. I didn't want to make anymore decisions! He began to explain... I heard the words "surgery", "banding", "o2 levels too low", "not effective", "open heart-full repair", "nothing at all"... 

 

I felt like we were back at square one.  

 

Mylah's last clinic visit showed her oxygen levels in the low 80's and it took a while to get there I remember. The surgeon explained that because she was already low and the banding was something that would make her levels lower, he felt the pulmonary artery banding wouldn't be effective for Mylah. It wouldn't help her any. So we had 2 options; do nothing... or full open heart surgery to repair all the defects.  When we decided on the PAB surgery we knew that Mylah would eventually would have to undergo open heart surgery to repair the holes in her heart, but we wanted her to have time to get stronger & gain a little more weight.  Now we needed to make another decision.  You could tell that all the energy had been sucked out of the room. It was a complete shock for everyone. Mylah's Walk With ME nurse Kim spoke up, because she knew what we were thinking. 

I cried... mentally, I prepared myself for the PAB. Although it's still a surgery, I was confident that Mylah would be able to endure it better than the full repair. Now the plans have changed. What's so funny is that as he was explaining the options  and discussing the details, all I wanted to do was say "Thank you". I wanted to thank him for being so honest and upfront. I was so confident in the fact that he seemed so confident. He acknowledged Mylah's Trisomy 18, but he didn't speak about her as if she wasn't there or wouldn't have a chance to make it. He didn't try and push a decision on us.  He spoke of her like a normal baby; that's what I've been wanting for her.  He didn't rush us to make a decision and made sure he let us know that the decision was OURS and that he would support us either way.  I thought to myself. He's who we prayed for. This is who GOD has sent to Mylah. He is so different than other doctors we've seen. It's just something about him. I'm not really sure what it is, but I don't feel apprehensive about him.  I cried because I was scared, not because I didn't know what to do or how we should proceed. As he spoke about fixing Mylah's heart I knew that we would still continue with the surgery. To come all this way and do nothing wasn't an option.  I still needed a day to collect my thoughts though, but my decision was made right there in that room.  

 

Mylah will undergo open heart surgery on Thursday, July 5, 2012 at the University of Michigan C.S. Mott Childrens Hospital in Ann Arbor. I ask that you please pray for her, & her recovery. Pray for Juwan and I. Pray for our families, pray for Dr. R. Ohye -Mylah's surgeon, pray for all the nurses, anesthesia staff, cardiologists, anyone who will have contact with Mylah. Pray for all the other families struggling to make a decision, or those whose children are at the hospital. Pray for all those dealing with a sick or disabled child. Pray for all the mother's who've been given a Trisomy diagnosis. 

 

Maybe the decision we gave for the PAB wasn't GOD's, maybe it was ours. Maybe he sent us signs and we didn't see them or didn't pay attention. But when the doctor walked in the room and said the things he said I knew immediately that this was GOD's plan & he showed me that HE is in charge so I've let go & I'll Let GOD......