Julia came home... finally!

Yesterday afternoon Julia was finally discharged from the hospital and able to come home to be with us, her family. We were all so glad but Mattie was definitely the most excited. I went to the hospital by myself first to take care of logistics like picking up medication (all 10 of them… that’s right, I said 10!) and signing paperwork. Then Bob and Mattie came when she was pretty much ready to go. When Mattie got to the hospital, she was so happy to see her sister and loving toward her. I was holding her at the time and she came over and gave Julia a big hug. Mattie loves her sister so much.

To celebrate, Bob got fancy filet mignons to grill at Costco and we busted open a bottle of Ridge wine that we have been saving for a celebratory occasion.

Julia is not totally “better.” But the doctors have a good balance of medication and she is stable enough to be at home. She has a pumping machine to give her continuous feeds that will run 20 hours a day (but must be changed every 4 hours so there’s no sleeping through the night.) She will be closely monitored over the next several weeks and months. She will most likely have 1 or 2 doctors appointments every week and at each appointment they will check her O2 blood saturation levels. They will also check her lungs for fluid and her heart and respiratory rate. We will see the cardiologist every 1 to 2 weeks.

Please keep praying for her and for our adjustment back to being a family of four.

Thanks so much!

Val, Bob, Mattie and Julia Brown

Julia held captive at the hospital... she didn't get to come home.

Newsflash: Baby held captive at hospital because she was too cute to send home! (Yah, I'm kidding... but I'm not really smiling.)

Julia did not get to come home today like we thought she would (or like the doctor’s thought she would. Her discharge summary was already typed up when we got to the hospital.)

What happened? Her O2 sats (the oxygen levels/saturation in her blood) have been trending down this week and her breathing was more labored today. When we arrived, her sats were at an all time low in 3 weeks. (For those who know about sats, her sats were in the low 80s and dipping down into the high 70s. With her average sats around 85. Last week and even earlier this week they were in the 90s.) It is okay for Julia to have slightly lower sats than a healthy person because of her heart defect, but these are too low. We were “ready to go.” This is obviously very disappointing on many levels: 1) to not have her home when we thought she would be and 2) that she's not getting better... or that she DID get better, but then had a setback. I'm exhausted and very sick of this hospital thing. I hate seeing my little girl struggle. Bob is weary, too. Tomorrow she will be 10 weeks old. She has spent 7 out of the 10 weeks of her life in the hospital. I’ve started to wonder if Julia really likes the hospital… yah, I don’t think so. I do know that the staff at LPCH loves her. Every nurse comments about how cute she is. (They are right!) I think they are all rooting for her. I know they can see how much Bob and I love her and want her better and to come home!

Please pray for her and for us. This (Julia's health) has been so much harder and worse than I expected it would be. I never expected Julia would have to spend so much time in the hospital. I know this was unexpected for the doctors, too. We could not have predicted for her to have a second heart issue. She was strong when she was first born. Things looked very straightforward. Now they are not. She is and has been an enigma medically speaking. (Where’s Dr. House when you need him? Haha)

Please pray for endurance. It is like we signed up for a 5K run (which is about the max that I can run!) and instead, it got extended to a 100K ultramarathon at the 2-mile marker. It just seems endless and overwhelming. We’re already pooped. How are we supposed to keep going indefinitely? I know Bob and I don’t have the strength within ourselves to do it. We will have to rely on God. However, this is easier said than done. Even though I WANT to rely on God, the bottom line is that I don’t want a life that *requires* me to rely on Him. I want to rely on Him on my terms. That’s not the way it works. That sucks. Suffering sucks (I think I need to make that a bumper sticker.) All I can do is put one foot in front of the other and trust God that I will have the strength to take another step after that one. I know He can carry me (like the famous Footprints poem.) The question is, will I let Him?

"Daddy, Julia's coming home today."

The first thing out of Mattie's mouth today after coming into our room when she got up was, "Daddy, Julia's coming home today." Mattie is excited to have her sister home after 3 weeks in the hospital. She loves her sister.

More details about Julia coming home later...

Bible verses and books of significance

I wanted to highlight some verses and books that have been significant to me in regards to Julia's life. I'm sure there are more... but that's all I can think of at midnight. :) Now it's time to go to bed.

BIBLE VERSES:

Jeremiah 1:5
Before I shaped you in the womb,
I knew all about you.
Before you saw the light of day,
I had holy plans for you...

Isaiah 43:1
But now, this is what the LORD says—
he who created you, Jacob,
he who formed you, Israel:
“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.

I John 4:18
There is no fear in love; but perfect love casts out fear...

Psalm 139:13-16
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

Romans 5:1-5
1 Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, 2 through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. 3 Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not put us to shame (or disappoint,) because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Romans 8:18-39
See blog post for full passage. I couldn't choose just bits and pieces... the whole thing is amazing.

BOOKS:

Hinds Feet on High Places by Hannah Hurnard
Holding on to Hope by Nancie Guthrie
Hearing Jesus Speak into your Sorrow by Nancie Guthrie
A Perfect Gift by Amy Julia Becker

Other books I'm looking forward to reading but haven't gotten around to them yet (or have started but not finished...)
Mountains of Spices by Hannah Hurnard (sequel to Hind's Feet)
Where is God when it Hurts? by Philip Yancy
Gifts I -Mothers Reflect on How Children with Down Syndrome Enrich Their Lives
Gifts II -How People with Down Syndrome Enrich the World

No GJ tube and coming home Thursday...

The doctors agree that now is not the right time to place a GJ tube in Julia. Since it would require Julia to be put under anesthesia, it could put more stress on her heart. And since this procedure is not needed for her health, but is more something for more convenience, they decided the risk outweighs the benefits. They are going to send her home with the NJ tube she already has in her nose. The main downside to the NJ tube is that if it comes out, we have to take Julia to a hospital to get it put back in since they have to use an x-ray to ensure that tube is in the intestine. So hopefully it won't get pulled out! (I accidentally pulled one out the other day when I was visiting Julia. It snagged on something when I was putting her back in the crib. Oops!) We'll have to be careful. She will come home with a continuous feed system. So Bob and I will get "trained" to use one. It shouldn't be too complicated. They are trying to make it so Julia feeds continuously 22 hours a day and then she can take a break from it for 2 hours a day. She can be unhooked from the machine during the day during that time.

After discharge, Julia will be monitored closely by cardiologists at Stanford and at PAMF (Palo Alto Medical Foundation.) If she gains weight and her heart shows improvement, she could get a GJ tube in at a later time.

Debating about a G-J tube

On Friday, it was looking like Julia would be getting a G-J tube. This is basically a G tube (a feeding tube that goes directly into the stomach) that extends into the intestine. However, yesterday, a resident doctor came by and told me that they were going to be consulting the heart failure team to decide if Julia's heart was up for the procedure. To place the GJ tube, Julia would be put under anesthesia and they are not sure her heart is strong enough (or the risk is low enough) for that. They don't want to risk making it too difficult for her to recover. This was a bit concerning to me because that means that Julia is not very strong. She is also not gaining weight. She keeps hovering around or just below 8 lbs. One day she gains, the next she loses. It has been this way for several weeks. I am scared, I must admit. I'm trying to stay "positive" but I'm scared. It really wears on me to see my sweet pea in the hospital every day. She is still having horrible dry heaving spells and they can't figure out if it is because she is pooping or if she poops as a result of the pressure from dry heaving. It is absolutely horrible to watch her. She'll dry heave 4 or 5 times in a row. Her face turns red and it completely wears her out. Then after it is over, she almost always gets hiccups after. Poor little pumpkin. Talk about ripping a Mommy's heart in two. Hopefully I will find out more today about the GJ tube. We'll see.

I just pray that God protects Julia from too much suffering. I just don't want her to experience too much pain. That is more than I can take. My heart is breaking for her.

It's out of my control and I hate that.

I spent some time yesterday afternoon standing next to Julia's crib holding her. She, like many babies, likes it when I stand to hold her verses sit. I'm sure she likes the swaying, rocking, and bouncing movements that I do when I stand. As I was holding her she was captivated by the TV screen. The nurse must have turned it on. It was on the hospital's nature scene channel. I found myself watching with her all these images of mountains, forests, rivers, birds, and whatever else. I started getting sad thinking about her life and all that I want for her. This is NOT what I want for her life- a life of illness and stuck in a hospital. I want her to be home with her family and held all day. I want her to be a part of our daily life. Not visited. She may come home soon, but she still is going to be hooked up to stupid wires that will get in the way of being able to carry her around anywhere or put her in my ergo baby carrier. I don't want to have to worry about a tube coming out of her intestine when I hold my own baby! I want her to experience and enjoy her world. I want her to feel the ocean on her toes, the snow on her nose, the wind in her face. I want her to see the forests and hear the birds. I want to see her smile and hear her laugh. Right now, her being sick seems endless and I am tired and weary of it for her. I don't want my daughter to be sick! It just isn't fair! I know that she may recover and go on to do all that I just described. But she also may not recover. It is out of my control and I don't like that at all. I was talking to a team of 3 doctors yesterday who had come in to touch base with me about Julia. We were discussing her heart and one of them said, "You know, as doctors we try to control all sorts of variables. But in the end it is really up to Julia and her body and what it does. Julia calls the shots. We don't have as much control as we'd like to think we do." I agreed and replied that that was every parent's first hard lesson. We don't have control over our kids- from conception. We can parent them. But ultimately they are who they are. They are created with personality, strengths, and weaknesses. Julia was born with quite a few things against her, medically speaking. She has Down syndrome, which has a whole array of medical challenges, she has a heart defect, and possibly a completely separate heart issue. But I believe she was also born a fighter. She's got red hair, which makes her feistier than the average baby. (haha!) She had been kicking me and making herself known since I was 15 weeks pregnant. She has already overcome a lot. But I don't want her to have so much to overcome. She shouldn't have to work so hard just to eat or BREATHE! It is not fair. It is not fair for her or for our family. Mattie should not have to be dealing with a sister who is sick and in the hospital. She should be able to have a healthy baby sister at home like most people. And all of this is completely out of my control. So that is where the rubber meets the road with my faith. Can I trust God through this? Can I trust that God is in control even when I am not? Foundationally, I do trust God with all these things. But emotionally, I waver. I am sad and disappointed and mad. And those feelings are also out of my control. The grief process sucks. It is hard. So today I'll put one foot in front of the other. I will hug Mattie and get her to school. I will go and love Julia the best I can at the hospital and then go home. I will get up the next day and do it again. I will try to hope.

Romans 5:1-5
1 Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, 2 through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. 3 Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Julia turned 2 months old yesterday... an email update

Dear Friends and Family, (though I should just say Family because our friends are just like family!)

Here is an update on Julia for her 2-month birthday (which was yesterday when I started writing this email.) Today, she will have been back in the hospital 2 weeks. She has been in the hospital 6 of her 9 weeks of life (That's two-thirds...sad!) Last Saturday, Julia got moved out of the CVICU upstairs to an intermediate cardiovascular unit. She had her own room for a few days (I called it the luxury suite) and then earlier this week was moved to a shared room. (Though she has the bed by the window so that is nice. And her roommate is pretty quiet.)

Thankfully, Julia is doing much better (in general) than when she was admitted 2 weeks ago. She is off all IV medications and has transitioned to meds she can take through her NG tube. She no longer is on oxygen and doesn’t have to wear the prongs in her nose. (She is happy about that and so am I!) Her blood oxygen saturation has been steady breathing on her own. Last week, they decided she was ready to switch from continuous drip feeds to bolus feeds. Continuous drip feeding is like an IV drip but through her NG tube where she gets small amounts of milk consistently into her belly. Bolus feeds are when they feed her through her NG tube every 3 hours or so (more like how she would normally eat.) However, she started throwing up a lot. So a couple of days ago, they put her back on continuous drip feeding. Her eating continues to be a concern- especially for me! No one understands why she is not tolerating food as well. She had an upper GI study done a couple of days ago. They had her drink some barium and then watched with an X-ray how it went down. It came back that she is anatomically fine. But she does have some moderate reflux (not a shocker!) She also continues to have a pretty severe gag reflex. If you put anything just ever so slightly into her mouth, she often has a very strong gag reaction. I am worried about her being able to eat like a typical baby one day. The doctors don’t seem horribly concerned about that. (They’re not the mom!) She also had an echocardiogram a couple of days ago. The results showed improvement! (I’ll take that!) The left side of her heart (that was enlarged) was a bit smaller and her function seems a little bit better. Is that a result of her heart getting better or a reaction to the heart medications? We don’t know. She will continue to get echocardiograms weekly or every 2 weeks for a while as to monitor her heart. They will not know the root cause of her heart issue for a while. Unfortunately, only time will confirm or rule out theories (most likely a month or two.) Her weight has been hovering around 8 lbs. as she loses and she gains small amounts. They upped the concentration of her formula/breast milk mixture yesterday to help increase her calorie intake. Hopefully she will start gaining weight. They ideally want her to be 10-12 lbs before they go in to repair her AV canal heart defect.

It is a day-by-day process. Last week they were hoping she would go home this week. Now it is looking like it will be next week (Thursday or Friday.) Thanks to the wonderful supportive friends who have been volunteering to watch Mattie and for Mattie’s school (that has an extended care program into the afternoon,) I have been able to visit Julia every day. Mattie finally got to visit Julia this past Sunday since she was basically over her cold (we had her wear a mask.) She was so happy to visit her sister! She misses her. It has been nice that Julia doesn’t have as many tubes and wires connected to her so that she can be held more easily. And it is generally nicer up in the intermediate care unit. The rooms are bigger with their own bathroom. This made it more comfortable for Mattie when she came to visit. Other babies and people around can intimidate her. Bob and I are hanging in there. When you’re in the thick of things, you just go into survival mode and do what you have to do. But it is definitely taking its toll. We are tired. It is very emotionally draining to have a child in the hospital. My patience with Mattie can run thin and sometimes I am just distracted by the worries in my mind. Please continue to pray for strength and endurance for us. Pray for emotional protection for Mattie through all this.

Well, I hear Mattie waking up now. So I better go start the day. I’ll keep you all posted on any new developments.

Much love,

Val, Bob, Mattie, and Julia.

Busy day at the hosptial

I arrived at the hospital today right around 11am just in time for "rounds." This is where a team of 6-8 doctors and residents all gather around Julia to discuss her case. The nurse practitioner (I think) gives the team an update on all that went on in the past 24 hours with Julia and any concerns. Then the team discusses changes that need to be made to Julia's plan or whatever. I (or Bob) am more than welcome to be a part of this by listening to what they are saying as well as ask any questions or speak up about any concerns I have. The doctors and nurses are always very receptive of questions and take what I say seriously. I feel very supported and valued by them. Before I got there, Julia had an upper GI study done. They had her drink some barium and then watched with an X-ray how it went down. They want to find out why Julia is having so much difficulty with her feedings. She is still spitting up a fair amount (reflux probably) and she has developed this horrible gag reflex. After they left, I ordered lunch and then sat down to pump. (It's seems like it is always time to pump.) I just get done pumping and then a pediatrician walks in to chat. (I really like this woman! She is the one who cried with me the night Julia was admitted. She has been checking in on me and Julia regularly every since we were admitted.) So I ate lunch while talking to her. Then finally at 1:00, I got to sit down and hold Julia (after being there 2 hours!) Not long after Julia and I get comfy, the woman arrived to do Julia's echocardiogram. She had to haul in a huge machine to do it. Since Julia was sound asleep, she just had me hold her during the echocardiogram. Then about 3 minutes into the echocardiogram, the PT and OT arrived to check in. I had not met either of them before. They agree to come back in an hour after the echo was completed. So the woman completed the echo and after a small battle with getting the cable out of the computer, was finally able to pack up the large machine and head out. Julia's heart rate kept rising a bit during the echo and so her the nurse spent some time looking her over after the echo woman left. We decided she was okay, but she would make a note of it. Julia and I had about 15-20 minutes of peace when the PT arrived. I put Julia back in bed. By this time she was waking up. The PT started working with her and giving me exercises to do with Julia. It made me feel good that I had already been doing many of them with Julia. However, in the middle of working with her and showing me how to tilt her pelvis up to relieve her abs from doing a lot of work so that she could work on kicking, Julia started throwing up. Just about that time, the OT came into the room. I don't know if it was the compressing of her tummy or the fact that she had to poop a bit, or both, but it made her spit up. Also, when the OT was working with her with the pacifier, she gagged and that didn't help either. It was decided that she has a super sensitive gag reflex and that we should not really work too much on putting stuff in her mouth until she starts tolerating food a bit better. Sigh. Well, now it was about 3:00 and I needed to go. Just then the social worker came by. I spoke with her briefly as I started to pack up my stuff. I made sure Julia was nice and tucked in. I rubbed her head, told her I loved her, and said goodbye. I got in my car and drove to pick up Mattie.

It was definitely a bit more busy than usual... but this was not terribly unusual. It is often a bit of a revolving door when I visit Julia during the week. I look forward to having her home eventually.

Romans 8:18-39

Romans 8 is my favorite chapter in the Bible. I have posted part of it on Julia's blog because it touches on so many things we are dealing with... suffering, hardship, hope, not knowing how or what to pray. I have posted it so that I can read it often. I need to remember that no matter what, God will never leave our side and we can never be separated from His love. Julia will never be separated from Him. He loves her. I need to remember that only God can work "good" out of Julia's difficult situation. I'm not sure what He'll do but I have to continue to hope.

Romans 8:18-39
18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. 19 For the creation waits in eager expectation for the children of God to be revealed. 20 For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope 21 that the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.

22 We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23 Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. 24 For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.

26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.

28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 29 For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. 30 And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.

31 What, then, shall we say in response to these things? If God is for us, who can be against us? 32 He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? 33 Who will bring any charge against those whom God has chosen? It is God who justifies. 34 Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. 35 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? 36 As it is written:

“For your sake we face death all day long;
we are considered as sheep to be slaughtered.”

37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Visiting Julia in her new room!

Julia moved out of the CVICU yesterday upstairs to an intermediate cardiovascular unit and she even got her own "luxury suite!" (Her own room.) Mattie woke up without coughing for the first time in a week, so we decided she could come visit Julia as long as she wore a face mask when she was within breathing distance of her. Mattie was very happy to get to see her sister. It has been over a week for her. Julia is doing pretty well. She is completely off "oxygen" and her saturation levels remain steady. Being off the oxygen (and not having to wear those annoying nose prongs) means that it is MUCH easier to hold her. That makes me very happy! She is switching from continuous feeds to regular NG tube feedings every 3 hours or so. They are hoping she can come home later this week!

Thoughts from the early morning...

It is 4:30am... I was supposed to get up at 3am to pump. Oh well. It is very difficult getting up in the night for a machine!

Bob and I went to visit Julia last night. Our date nights lately consist of a quick dinner out (strategically choosing a restaurant that is either close or on the way to the hospital) and then a visit to Julia. I am happy to get the time to visit her together, but it's not the "funnest" of dates.

Julia got to move out of the cardiovascular intensive care unit to an intermediate nursery upstairs on the 3rd floor. To quote the song from the Jeffersons, "We're movin' on up!" It is quite the luxury suite! Julia has her own room and it is big! It has a huge bench seat that you can use as a bed if you need to as well as its own private bathroom. But the best part about it is that Julia is doing well enough to be there and out of the CVICU. She is off all IV medications and is tolerating the replacement medications that she takes through her NG tube very well. She is also getting less oxygen through her nose tube. They would like to wean her off air completely. I think the goal is to try to get her to come home in a week.

Despite the really nice room and the fact that she is improving, I find my heart still sad. It is really hard to be separated from my baby. I feel like I am missing out on such critical bonding time when I only get to see her a few hours a day. When I am there, it is really hard to hold her because she is hooked up to so many wires. Last night she was kind of fussy. I wanted to hold her close and walk her around the room to soothe her. But I couldn't. Though the air flow helps her feel better by relieving pressure on her lungs, the prongs in her nose bug her and she is constantly moving her head from side to "shake them off." So it is just difficult to be close and snuggly. She is getting fed breastmilk constantly around the clock through her tube with an IV drip machine. Small amounts of milk flow into her stomach all the time. She is pretty much up to the same quantity of milk as she was eating before going to the hospital. However, I'm scared she is going to forget how to eat with her mouth. Babies CAN forget how to suck and sometimes have to be retrained. Will she even want to try? How is all this hospitalization going to affect Julia's overall development? Because she has Down syndrome, there is already a risk she could never eat on her own, talk, or walk. The thought of that makes me so sad. I am scared for her future. She is doing better but is still struggling in many ways. Things can take a turn and her life could be dramatically shortened. Why her? Why Julia? I struggle to understand what God will teach us through this child having to suffer? We are indeed learning that we can not control the future and that we only have today. Am important lesson, but must it be learned at Julia's expense?

I will pray that I have the faith and faithfulness of Job. I'm sure I will also be tempted to "curse God and die." I am indeed angry that our lives are the way they are. It seems too much for one family to bear. However, I do have a forgiving God that welcomes me as I am and allows me to struggle with my circumstances with Him. I may struggle for the rest of my life.

Lord, please protect and heal Julia. Keep her from too much suffering. She is only a baby. Help her to feel Your love constantly and to feel my love for her even when I am not with her. Protect Mattie from this difficult season. Help protect her from the stress that her parents feel. Help her to have a deep knowing that none of this is her fault. Please bring us closer as a family instead of this tearing us apart. Help prepare our hearts for the challenges that lie ahead as there will be many. However, help us also to have eyes open to see the joys and successes no matter how small. Amen.

Email update 1/13

Dear Friends and Family,

I know many of you have been waiting to hear what the results were of all the doctors gathering Wednesday morning to discuss Julia’s case.

All four surgeons as well as cardiologists and other doctors agree that now is not the time for Julia to have her heart surgery. They do not believe that the hole in her heart is causing any of her heart issues. And they really want her to get stronger and grow bigger before they put so much stress on her little body. Right now, recovery could be very difficult for her. At this point, she seems to be doing “better” with all the various medications she is taking. She is not on any pain medications because she is not in any pain. That is comforting. They are working on “weaning” her off air flow and IV meds (and switching to oral meds) so that eventually she can come home. They have to find the right “cocktail” that works for her.

However, the doctors still don’t completely know why her heart is enlarged- especially the left side. They agree that it is probably a completely separate issue from the hole in her heart and the fact that she has Down syndrome. They have a few theories and only time will confirm or eliminate each theory. The theories range in severity and one in particular is quite bleak. They will most likely know with much more certainty what it is in the next few weeks. Meanwhile they will continue to X-ray her lungs, do regular echocardiograms, and monitor her. So the plan at this point is to just wait and see. (Torture.)

Meanwhile, on a happy note, Julia continues to charm all the staff at LPCH. She has very alert times and seems to be very social. She looks people right in the eyes and in the face. She turns to look to anyone who comes near by. Every one comments about how cute and beautiful she is (and I agree!) Several have also mentioned how she seems to be so close to smiling and that she smiles with her eyes. (It may be hard for her to smile because she has so much tape on her face holding the tubes in her nose! Grr!) She is SO expressive! She makes all kinds of expressions with her face. She is wiggly. (She has been wiggly ever since I first felt her at 15 weeks pregnant!) She had difficulty keeping her CPAP (the little prongs that stick in her nose that blow air) in because she is constantly moving her head around. (I think it really bugs her… it would bug me, too!) She is generally mellow and does not cry too much. (But watch out, she can get mad! Just try to suction her nose! She’ll let you know that she doesn’t like that too much!) She is a beautiful life and every day she is in our lives she is a gift. We can not take that for granted.

So how can you pray?
• That the cause of her enlarged heart is not the “worst case” scenario.
• For healing.
• That God would be preparing us for whatever lies ahead. We know that God CAN heal Julia, but we also know that He may not.
• That we would trust God with her life and our lives. That we would remember that He is faithful to walk along side us no matter what lies ahead- no matter how scary.
• That Julia would get strong enough and well enough to come home. We miss her.
• That we can balance being at the hospital and time with Mattie
• That God would give us (especially me!) supernatural patience in parenting Mattie when life is stressful and we (especially me) don’t have much “reserve” for dealing with her when she is challenging.
• That Bob and I would be able to carve out time to spend together (and that we would keep that a priority.)
• That Bob and I would also get time to be alone and “get away.” (Bob especially needs this.)
• That Mattie would be able to “kick” the last bit of her cold so she can go up to visit Julia. She has this cough that won’t go away!
• For Julia to really be able to smile- it would fill my heart with joy!

Praise:
• That Julia is stable right now.
• For our friends who have been so supportive with meals and childcare and prayers and words of encouragement. It is helpful just to know so many people are praying!
• That Julia is getting care from the top doctors in the country and even the world.
• That no matter what is down the road, God, our family, and our friends are going to get us “through.” It is going to be a hard road ahead no matter the outcome. But I believe we will ultimately be okay.

Thank you all so much. Please never hesitate to reach out to us. If we don’t get back to you right away (or at all), it is not because we did not want your email or your call. I especially appreciate getting notes/emails/texts of people just letting me know they are praying or thinking of us. Thank you for walking this hard journey with us.

We love you all,

Valerie, Bob, Mattie, and little Julia

Update on Julia 1/9 email

They are still trying to figure out why Julia’s heart is enlarged. On Saturday, they went in with a catheter up a major artery into her heart to take pressure readings at different places within the heart. (Amazing they can do that on a 7-week old baby!) They also took a small sample of heart tissue and are now in the process of biopsying that tissue. (We should be getting the results of that today or Tuesday.) When they went in with the catheter, it was determined that everything was within a reasonable range of what they’d expect for a baby with an AV canal defect (I can’t say that they determined everything was “normal” because her heart is not normal right now.) So it does not appear to be a physical issue causing the enlarged heart. So now they are trying to determine if a virus is affecting the heart. They had to sedate her for the procedure at 1:00pm. She was still rather sedated at 10pm that night. So she had a breathing tube. But she was finally stable enough that it got taken out later that night. Sunday, it was discovered her hemoatocrit was low. (Hematocrit is a blood test that measures the percentage of the volume of whole blood that is made up of red blood cells. This measurement depends on the number of red blood cells and the size of red blood cells.) So they ended up giving her a blood transfusion. I guess she was warmer, looking much more pink and doing better after that. After 2 days of not getting any food (milk,) they started giving her some last night in very small quantities. That had to make her happy! She is on medication to help the pumping of her heart, medication to keep her from blood clotting (after getting the catheter), a diuretic to keep fluids down in her lungs, as well as several others. She is still snotty. Today, they put a higher level of air flow into her nose (CPAP) to help her lungs not work so hard. (She seemed to really like that. She is much more peaceful with it in.) I guess one side of her lungs is a little collapsed behind her heart since her heart is taking up so much room. She has been a bit of a mystery to all the doctors. They have not been able to make concrete conclusions. There will be a huge “pow wow” of sorts with her entire team of medical professionals (surgeon, cardiologist, pediatrician, etc.) on Wednesday to determine if she needs to have surgery right away. She is currently assigned to Dr. Reddy if she was to need surgery and he is one of the best in the world! So I know she is in good hands.

I got to hold her last night as well as today. That was good. But I hate seeing her in the state she is in. She has so many tubes and wires connected to her. Overall, she is doing “better.” But she still doesn’t look great. It is such a helpless feeling. I want her to be better and there is nothing I can do to help make her better. Bob has been such a trooper through this, too. Despite his strong dislike of hospitals and doctors he has been so supportive and involved. He has also been wonderful with Mattie by spending quality time with her and helping out with her. I appreciate him so much.

I will keep updating you all. I have gone back to emailing (vs. only using the blog) since things are changing so often. I will continue to post all emails on the blog. Feel free to pass along this email or share Julia’s blog address with anyone who might be interested. I appreciate every prayer. (Oh, and by the way, Mattie did not have an ear infection. So that was good. Her ear isn’t bothering her anymore.)

Please pray the doctors are able to figure out what is going on and are able to make the best recommendations for her care. Please pray the biopsy of her heart tissue comes back today. Please pray that she can remain peaceful and comfortable.

Much love,
Val, Bob, Mattie, and sweet little Julia.

Julia is back in the hospital

Dear friends and family,

Unfortunately, we had to take Julia back to Lucile Packard Children’s Hospital yesterday. She had four doctor’s appointments this week and it is probably a good thing she did because she could be checked out and it could be discovered that she needed some extra monitoring. Other than her not taking the bottle well and her usual stuffy nose, I was not seeing any major change in her. However, it was discovered that Julia’s O2 saturation levels were low. It is not something I could have detected until it got really bad. For those asking, “what does that mean?”
Oxygen saturation refers to the level of oxygen carried by red blood cells through the arteries and delivered to internal organs. As red blood cells travel through the lungs, they are saturated with oxygen. A low saturation level could indicate a respiratory illness or other medical condition. For Julia, it could mean her heart defect is not as stable and something is not going right.
Basically, Julia’s O2 saturations were in the 80s and they should be in the mid to upper 90s. This is bad- but it was not a critical or emergency situation. Yesterday at the pediatrician’s office when her “sats” were still low (after they were a bit low at both her 2 doctor’s visit the day before), Dr. Chen recommended Julia get a chest x-ray (do to her congestion and possible fluid in her lungs she wanted to rule out pnumonia.) She also talked to the pediatrician at LPCH, and it was decided that it would just be a good idea for Julia to be monitored more closely for 24 hours or so. So I took her in around 4pm after finding a friend for Mattie to spend the afternoon with. I ended up spending 7 hours at the hospital yesterday afternoon/evening. She was first admitted in the pediatric ICU and then after testing and doing an echocardiogram, it was decided she would be moved to the CVICU- which is the cardiovascular intensive care unit. It looks like there is an issue with her heart, not her lungs. It was a grueling 7 hours. Poor little sweet Julia was seen by a dozen doctors or so coming through. I had to tell Julia’s history and story with every one. She had oxygen put in her nose, she was hooked up to monitors with stickers on her chest as well as things wrapped around a finger and her big toe (the O2 monitors), she had to have 2 IVs put in, and she got the echocardiogram. On top of that all these doctors all had to take their stethoscopes and listen to her lungs and heart. She was awake for 5-6 hours straight because she was never left alone! IV’s are VERY difficult to put in her small veins (smaller than usual- like her mother’s!). I have never seen her cry so much. By 9:30 pm, she was SO DONE! Her eyes were red, she looked pale, and she was breathing really hard. I’m usually pretty tough- but I just couldn’t stand seeing her that way! I finally broke down. It was so hard. She would look at me right in the eyes with these pleading eyes as if begging me for help, asking me to make all these people go away so she could get some sleep. When she kept wiggling and crying through the echocardiogram, I spoke up and suggested that she be allowed to get some rest. She was over-stimulated and overtired. Also, because there were so many people coming in and out, it was over 5 hours before she got fed. I am certainly not complaining about the care she was getting at Stanford- because, honestly, they were all just doing what they had to do determine what was going on with Julia. I’ve been really impressed with all the doctors. But it was just really hard on her. And that was hard on me. I finally left the hospital at midnight.

So what now? They are playing around with some heart medications to help her heart as well as some other medications. They need to do some further testing to rule in or out various scenarios with her heart (some more serious than others.) Then after all that, they will determine if her heart surgery will be sooner or later. Ideally, they would have wanted her to be 10-12 pounds for her surgery. She is currently hovering around 8lbs. She will be in the hospital at least 3 days.

To top things, off, Mattie woke up with her ear hurting at 5:45am this morning (so much for getting sleep.) She has had a croaky voice and has started to cough in the last 36 hours. So she is probably getting or has an ear infection on top of a cold. We’ll be most likely taking her to urgent care today (or most likely Bob will.)

So please pray for
• Wisdom for the doctors
• Conclusive test results
• Strength and endurance for sweet Julia
• Rest for Julia
• Strength and endurance for Bob and me- as we are low on sleep, we will have to divide our time between home and hospital, as well as split up to take care of both kids who are sick
• Mattie’s possible ear infection- that she would get diagnosed, feel better and recover quickly
• Comfort and peace for Mattie who doesn’t like that her little sister is back in the hospital (and doesn’t like her Mommy at the hospital either.)

Praise:
• The doctors are so team-focused and really work together to come up with the best solutions for Julia
• The doctors really do seem to have Julia’s best in mind and have been very on top of things.
• The doctors and nurses have also done a good job in keeping me in the loop and sitting down to really explain what is going on. The pediatrician at LPCH spent a good 20-30 minutes giving me a lesson about all that was going on in Julia’s heart as well as listen to how I was doing emotionally and even cry with me (at 10:00 on a Friday night!) I have felt cared for as well.

We’ll keep you posted as soon as we know more.

Much love,
Val, Bob, Mattie, and sweet little Julia

Little things about Julia at 6 1/2 weeks old....

Her best talent: raising one eye brow. It is very impressive since neither Bob or I can do that!

She also gets the award for the best pouty face. Sometime I'll capture it on film and post it.

Her most awake time: Between 9pm-11pm. (Much better than 2am-3am!)

What makes her really mad? Getting her little nose suctioned. Boy, she gets mad! But then breathes so much better after we do it. How I wish her congestion would go away!

Most frustrating thing right now: That she will suck on her tongue or suck in her sleep but will not suck a pacifier or bottle right now. Stinker! She gags very easily right now. I'm not sure what has changed! Hopefully, the experts will help!

She seems to be very ticklish. She gets squirmy when I rub her feet and sometimes tummy or chest.

She seems to be able to lift her head pretty well- I think she's pretty strong. :)

She often gets the hiccups after she spits up.

She still really enjoys her activity gym. She'll lay on her back for a good 20 minutes or so very content just looking around.

She tracks with her eyes very well and will look me straight in the eye. I swear her eyes smile at me sometimes. I can't wait for the smile to travel to her mouth!

She is so squirmy when she is naked or just in her diaper.

Four doctor's visits this week... here we go!

Julia is seeing 4 doctors this week:

Wednesday: Occupational therapist. A really thoughtful woman from the Silicon Valley Down Syndrome Network put in a call and Julia is seeing one of the head OTs. I am very very anxious for this appointment. I want them to help Julia figure out this eating thing!!! I'm desperate.

Thursday: In the morning we see the gastroenterologist and in the afternoon we see the cardiologist. I want to find out if there is a connection between her digestion, reflux, or whatever and her not eating. I hope to find out more about when Julia might be having her heart surgery.

Friday: Julia goes in to her pediatrician for a weight check. Julia's pediatrician has been GREAT so far. She has personally called me 4 times in the last 2-3 weeks just to check in- even on Christmas day! I'm very grateful.

I will let you know how all the appointments go at the end of the week!