Great Report!

Our tiger baby had her follow up appointment yesterday. She was definitely not happy to be back at the hospital. When they put on her hospital bracelet she really made a fuss. Poor baby just doesn't understand what all this means for her. 

She had an X-ray and was examined by the cardiac surgeon and it could not have been a better report!! She's doing exceptional with the surgery. Everything looks just as it should in her heart! Her oxygen was 98% and it still shocks me to see that reading after we were used to seeing 68%. AND it does not look like we will need a cardiac catheter procedure to plug the MAPCAs either (something they thought might be needed to follow the surgery). 

It takes 8 weeks for her to heal and it has already been 2 weeks. The doctor told us we should treat her normal and not have to restrict her...if she is comfortable doing something than let her — That she would know what she can do. Well, that means tiger baby should be running around here and doing somersaults very soon (;

I can only be in awe that we are on the other side of this. It felt like we have been climbing a mountain ever since we got these children 3 months ago... I hope this summer is full of uneventful playful bliss at the Lekberg homestead. (With the exception of one joyous event) Saturday we get to celebrate a BIG BIRTHDAY!! This little charming will be THREE. 

Easter

Even though this was Ian and Jovie's first ever egg hunt it only took them a few seconds to catch on. Easter egg hunts are a whole lot more fun with 3! 

This Easter meant so many things, it's significance of having a Savior has always made it my favorite day, that alone makes for a day full of rejoicing. This Easter was three months to the day that Ian and Jovie were placed in our arms. And we especially are very aware of the celebration of us being HOME from the hospital with a baby who's heart is now restored.

The love of Christ for us was more real to me this year than ever. Jovie's open heart surgery was incredibly scary and emotional. I remember vividly standing in my closet at 4am getting dressed the day of her surgery and just going through the motions but in disbelief that the day had come. I remember thinking that if I could, I would trade places with her. I would have saved her from having to go through all of this if I could have. When the surgery was over Jovie spent 3 days in the cardiac ICU. She was sleeping for almost all of that time and I spent hours in a chair beside her just staring at her. She was the most beautiful sleeping baby despite all the tubes and IVs everywhere and my heart could have exploded just looking at her. Even now thinking about it I am getting so emotional. I love her so much and in the moment that my own child's life was in question, I couldn't hardly stand the amount of love I felt... when people use the expression "they were about to burst" that was never truer. Love is powerful and I can't say that I've ever experienced it quite like I did last week. Going through this experience I have felt overwhelmed by a simple truth I've known all my life. 

“Jesus [loves] me; this I know

For the Bible tells me so.

The Love of Jesus Christ:

"And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. (Ephesians 3:17-19)

How, exactly, does Christ love us? 

"The love of Jesus Christ manifested itself in His giving Himself, laying down His life for us. His was a self-sacrificing love. The death of Christ was not the only sacrifice He made, but the crowning one. His whole life was a sacrifice, from the manger to the cross. His becoming man at all was a sacrifice of immeasurable greatness and meaning.” (A. Torrey - see Philippians 2:6-7.)

 Nothing can separate you from Jesus’ love for you. Nothing can stop you from being loved forever. We don't deserve it. We are helpless without it. His love is invincible.

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? Yet in all these things we are more than conquerors through Him who loved us. For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord. (Romans 8:35-39)

Leaving the hospital

We were discharged from the hospital last night. It felt AMAZING to walk out of our room and out of there with our girl. 

These last 5 days have been the hardest days. I can't even tell you the relieve it is to be going home. Jovie was sick throwing up a lot yesterday and threw up most of our way home. I can only imagine how painful throwing up is to her. Luckily she hasn't thrown up anymore. 

This morning she starting to walk around the house some. She moved slowly and with caution but went up and down the hallway and it was so strange not to hear her breathing hard!! I am so used to being able to hear her wherever she is. She also put on her jacket like she's always done but I wonder what she thought when she realized she doesn't get cold anymore. Her nose has run everyday that we've known her and her fingers are always ice cold. The change we see already is just a miracle!

Mae has been so incredibly sweet to Jovie. I've caught her kissing her so many times today. 

Jovie will need some time to recover - she gets meds around the clock and we will need to be extra careful with her until she heals. They said it will take 8 weeks for her body to heal. Tomorrow will be 1 week, it's pretty incredible the way God designed our bodies. 

So we have a follow up appointment with her surgeon next week and her cardiologist the week after next to make sure things are all going well. It amazes me what doctors can do and how quickly Jovie is recovering. Imagine how much her life has changed in 6 days. Forever. 

Step Down Unit

Yesterday afternoon we were able to move to the step down unit... So we now have our own room!!! 

I finally got to hold her too. It was well overdo - I could feel my sweet darling melting into my arms. She's needed this... And so have I! 

Last night I was able to stay the night with her. She's still been sleeping almost all of the time and is still in a lot of pain, so they are giving her something around the clock. It's just been a couple of times we've heard her sweet voice. Last night we face-timed with Mae and Jovie Ming surprised us all when she made the kissing noise when she heard her big sister voice. I am so blessed by the bond these children already share. Mae prayed last night and thanked Jesus for Jovie's pink toes. 

This morning they came and took us to go get X-rays. So all the sweeties on this floor ride down in radio flyer wagons. I think Jovie enjoyed the little trip outside of her room. This trip will be a daily 4am wake up call while we stay here. 

ICU 4

Jovie had a good night last night and her levels were all good. She did throw up 3 times last night, which breaks my heart but otherwise she slept. She had an X-Ray that was good as well. 

This morning the doctors said it was alright to take out several of her lines, so she has lost a few of the wires today. The most important one being one that went into her heart. It's a big deal to remove it. We have already been given the okay by the doctor that she can move to the step down unit when they have a room available. Yay!! This is huge progress and she will have her own room that I will be able to stay with her through out the rest of her stay. Double yay!! 

She's not been herself yet and has said "momma" just a few times but we hope to see more of the Jovie Ming we know soon! 

Ian has been incredible! I mean there's just not a possible way for him to be an easier kid while we've been here. He met the hospital dogs yesterday and it was the cutest thing ever to see him so excited. He's told everyone (strangers) about the experience (: pointing to the spot in the waiting room where he saw the doggies. 

The dog he is petting is Uno and he is the cardiac doggie and comes to visit Jovie too. I can't wait to see him when Jovie is feeling a little better. Such a sweet pup! 

It's bizarre to be spending days at the hospital and it's got to be confusing to Ian too. He keeps saying "mommy daddy home" so I know he is starting to tire of this craziness. 

Yesterday afternoon my parents brought Mae down here to the hospital. Ian and Mae got to speak with an incredible person on staff here about what they would see when they see Jovie. They used a doll named Charlie and got to be the doctors. After that Kalli went with us to see Jovie and explained all of Mae's questions in just the sweetest way possible. The kids were only with Jovie for a minute but it made a big impression on Mae. Ian is saying "Jovie doctor" today. (: 

ICU 3

Today Jovie continued to do well but she was awake more and upset. They are slowly wheening her off several things to get her ready to be able to move her out of the ICU and into the step down unit. We are hopeful that could happen tomorrow. 

She was able to finally drink something and was so happy to get something real, but she threw up ): it was pitiful because as you can imagine it hurts. 

She was peaceful for most of the day but she had a few difficult times. She was getting mad tonight because she didn't like lying there with all the wires and things everywhere, and then she'd cry and kick and that would hurt her so she'd cry because it hurt and I was doing my best to comfort her but I can't pick her up, and that's what she wants, so that would make her mad too. Very hard to see her upset and not be able to do anything. I pray she sleeps well through the night tonight. 

ICU 2

Last night Jovie did very well. She's gone through an incredible thing and her body is still in shock. The breathing tube came out last night at about 12am and she is breathing on her own now. She is starting to wake up this morning and has been very upset. She wants me to pick her up and hold her but I can't and it kills me. 

They've already decided that she will be in the ICU for at least another 24hours. She's still on some support to control her blood pressure and something that is helping her heart pump. 

They warned me that today will be the hardest for her because she will be waking up but still has so many wires going everywhere she will have to stay still and we can not hold her and comfort her the way she wants. 

I will keep updating the blog when I can.  We can not thank you enough for your prayers for our girl. 

In ICU

Today has been the day we've dreaded for so long and it's now over... Jovie is doing sooo well in ICU. She still has the respirator breathing for her but they believe that her breathing tube will be able to come out tonight. She has been waking up and looking at us for a few seconds at a time but otherwise has slept peacefully. 

I was afraid to see her with all the crazy amount of tubes and IVs but it was so much better than I thought. I really felt like the amount of love I feel seeing her just makes it all okay. 

She has beautiful pink fingers and toes. Her skin is just glowing. 

This is her oxygen level at 98%. I am stunned... She's doing so much better than they even thought. They expected her to be at about 85%.

Every part of this day has been exhausting. It's probably a really good thing we can not stay bedside while she is in ICU.   I just said goodnight to our precious tiger baby — it hurt to leave her. We are staying in a hotel .5 miles from the hospital. We need a really good nights sleep, ready to be there for our girl tomorrow. 

Update 2

Jovie Ming is done with the surgery now and is getting settled in ICU. We just spoke with the surgeon and he said everything went as well as it could. He went into detail about the repairs they made in her heart. The best news is she is not using a pace maker; her heart has found it's rhythm and she is at 100% oxygen level. I can not tell you in words the way I feel but I am more than grateful for this news. I know that it's still not real and when we get to see her will be incredibly hard. We hope we can go back to the ICU by 3:30. For at least the rest of today and tonight she will stay sedated. I can not wait to see my sweet tiger baby's pink lips and toes. 

Update 1

This morning went as planned. They gave Jovie medicine that made her very sleepy at about 6:30 and at 7:30 they took her back. She was so tired and after we gave her kisses she left without even really knowing it. The sweet anethesiologist took her back in her arms so we just handed her off and Jovie didn't even know. I felt like I needed that same medicine so I could let her be able to go. I cried in Cody's arms and then had to go to the bathroom and throw up. 

It's so unreal that we are waiting while our daughter is in this building on a bypass machine pumping for her heart while surgeons make the repairs to her heart. We've received 2 updates and both have been that things are going well and they are still making repairs. 

Waiting is so hard. Thank you all who are praying, texting and emailing us. 

Surgery Tomorrow

Today we spent the day at the hospital getting ready for Jovie's surgery tomorrow.  This is more overwhelming than anything I've ever done. It was just an incredibly hard day. We met with nurses and doctors one after another describing in detail the surgical proceedure, every risk involved and all to expect when we see Jovie in ICU tomorrow after it's all done. I tried my best to hold it together in front of the doctors but all I really wanted was a sound proof room to go and scream and cry and get out this crazy feeling I'm having as the time ticks closer. See I know this surgery is not only necessary for her LIFE, but we will get an active little girl... A PINK little girl very soon. 

We have to be at Egleston at 6am in the morning and they will take her back to the operating room at 7:30. We heard different times for her surgery. We were told the surgeon will take 5-6 hours and we were told to expect 9-10 hours that she will be away from us. Whatever the amount is, we know it is not a small surgery and however long it takes doesn't matter as much as what they find as they operate on her and that everything goes smoothly. 

We heard today that the piece they are putting in to act as her pulmonary artery will need to be replaced by open heart surgery in 3-5 years from now. There are also many more times that she will have to do additional work on her heart through her main artery (catheter).  I know that I need to focus on tomorrow but I also know God needs to make me strong from this. There's more hard times ahead. 

My dear friend just sent this to me tonight. 

I  know God can do exceedingly and abundantly more than I can even think or ask. I am praying we will receive an unleashing of God's peace through this. Not little drops of his strength or a trickle, a powerful explosion of release as if a dam has burst to release a river of his peacefulness. 

John 14:27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

At the doctor for Ian

Today was Ian's appointment with the pediatric gastrointestinal doctor. I don't think we've shared Ian's "special need" on the blog, partly to protect his privacy and partly because it's just not fun stuff to talk about. 

Ian was born with esophageal atresia and anal atresia. In layman's terms he was born with a hole between his esophus and trechea and the opening to his anus was missing. He underwent surgery in China that saved his life. When he was brought to the hospital his lungs were filled with fluid and he suffered from severe pneumonia. A very special nurse, Ms. Zhu at the hospital in Pingdingshan, advocated for him to find people to monetarily sponsor him to receive the necessary surgery to save his life. He spent 80 days in the hospital and then went to an orphanage in Beijing. (The pictures above were taken by nurse Zhu).

We wanted to get Ian in front of a specialist to find out what this means for him. The doctor told us today that continence will be problem for Ian. We already suspected he had no control over his bowel movements. Right now that means a lot of diaper changes, but as he gets older this will be much more of an issue for him. We hope we can find the answers to help him.

We've also noticed a rattle in his chest after he eats or drinks and this may mean he still has a hole between his esophus and treachea, allowing fluids to go to his lungs. If he does, that will mean surgery for him in the near future. 

We will have several tests done to find out exactly what's going on with Ian. The signs could point to him having a syndrome called Vater or Vacterl (we were told by the doctor not to google, wise advise) so I don't even know what that could mean. We are taking things as they come. We are not surprised by this report today though. The doctor kept saying Ian was a project; he didn't mean it in a bad way, just that there were a lot of things to figure out for him. We will do everything we can to enrich our children's lives and finding them the medical care to help them. 

Jovie was just happy this doctors visit wasn't about her. 

We are sharing this today because we have felt the complete outpouring of love and prayer surrounding Jovie's heart. Our friends and family have prayed on their knees and shared our bitty girls story with  other prayer warrior friends and we don't even know how many people are lifting her up but IT IS GOOD! And God is answering our prayers. 

Let me share our good news... Jovie's blood coagulation was abnormal, meaning it wasn't clotting the way it should,  putting her at a greater risk for surgery. We asked our friends to pray for her when we found this out on Thursday last week.  We had more blood tests done on Friday to find out why it was abnormal. Today her blood work came back, and she is NORMAL now. The doctor said "keep doing what you're doing;" prayer was the answer he had for this change in her blood. God heals - he is the great physician and I love that Jovie's doctor recognizes this too. Jovie is set for surgery next Thursday as planned.

As we draw closer to heart surgery, it is getting harder and harder to think clearly. In my mind I am trying not to think about it, but it's always there. There's a lot we have on us with this, but Cody and I rest in the assurance that we are not alone. 

I'm looking forward to six weeks from now when our family is on the other side of Jovie's surgery and enjoying the summer together. Very shortly our little Jovie Ming won't have to fight to keep up with her crazy sister and brother! (: