Home for a few days

Hubert & I are home for just a day or 2 so he can get some work in, we can rest, regroup, repack, and maybe get our kids. They are still trying to adjust Gracie's medication. She isn't really keeping her milk down so they still have a feeding tube in. She may look chunky now but I'm sure she won't for very long. Caleb had reflux and he threw up all of his milk. She may have the same thing as he did. I'm going to try and get some rest at home.

BlogRoll 9/29/08

Just a quick thanks to all those who continue to send emails and post comments on our blog. We read them all and appreciate your thoughts and concerns for us so much. If you don't hear back it's only because there are so many, it is hard to know where to start in answering them, but know that we appreciate our friends, neighbors, family, ward family, and coworkers so much.

Right now, Mackenzie and Caleb are staying with Hubert's sister, Lana, and so we are grateful that they are being taken care. Of course we miss them so much and it is getting harder and harder to be here and away from them. I think after a week they are kind of getting a little homesick for us too. Last week, the Ronald McDonald House had a little pizza party and BINGO. Mommy was the very last person to get Bingo so all the good prizes were gone by then, which was fine with me because the other people playing looked like they needed them a lot worse than me, so by the time I got to pick a prize I chose a toy for the kids. So we have a "coming home" gift for them that I think they will like. I am getting excited to have our little family back together and be home again.

Yesterday Hubert & I went to church at Ben & Jillian's ward. We ran into an old friend too from the University Wards, Theresa Cox. That was nice. We felt like we needed to go to church but neither one of us had thought to bring church clothes so we just wore our old sloppy joe clothes and tennis shoes. We sat in the back pew and tried hard to look like we were "new" and a little clueless about skirts and white shirts and ties. People were very nice though and of course we didn't get any strange looks and we just explained that our little girl was in the NICU at OHSU.

Just Waiting...

Well, I wish we had more news to tell but right now we are just waiting and waiting for Gracie's blood pressure to get under control. Right now it is way too high. The doctors have tried 2 medications and so far no luck. So we are stuck waiting. Once they figure that out, maybe we can get her to start eating and then maybe we can talk about coming home.

Sleeping Beauty Awakens.......Finally

Bed Bugs

Not in Gracie's Bed!

An interesting story.....the first day we got here we came into the main entrance of the hospital where all the admissions offices are and so forth. The second day we came in the same way and Hubert noticed that there was a WALL there where there hadn't been the day before. It was taped off and all these workers were inside the plastic area drywalling this whole new area. Hubert thought it was strange. I was so drugged up on Percocet mind that all of this escaped me; I didn't notice a thing. Anyways, so a week later we are reading in the newspaper that they were storing a patient's belongings in this area and some hospital staff started noticing little bugs crawling out of a fanny pack. After some investigation it turned out that they are biting bed bugs, the kind that come out at night and suck your blood! No kidding. So the hospital staff went into this huge frenzy to try to aggressively treat the problem and fix it before it got out of hand.

Anyways, so my hubby is gone back home for a day leaving me to fend for myself. I am clueless. He has been pushing me around in a wheelchair for a week and I have no idea still where anything is! I don't even know how to check messages on our phone. I am doing okay though. This is a good test to see where I am at in my recovery I guess.

Update 9/26/08

Gracie is awake alot more now. She is even crying some too, but not a lot. This morning she was wide awake when I got there so I got to spend some awake time with her which is nice. Once I get her in my arms though she almost always falls asleep right away. Yesterday she had 2 poops, her first ones. I know that doesn't seem that exciting, but the doctors were pretty excited about it. Today they are increasing her milk. They took the comfort flow oxygen off, so she is not getting any oxygen supplementation. They still have the nasal cannula in her nose but they are weaning her off of that in the next day or so. They are trying to get her blood pressure medication just right. She may be on one or more of those as she goes home. The nurse said they were going to take the tube or IV or whatever it is out of her belly button today. This lets them get a constant reading on her blood pressure. With that gone, they said they will do a cuff measurement of her blood pressure every 2 hours to keep an eye on it. If that isn't sufficient, they will do a peripheral artery line.

Things are looking good. I will try and post some pictures later. Hubert had to run home to do a couple of things and he is going to bring our camera cord back so we can get our pictures off. In the meantime, the police man comes and gets me and takes me to the hospital so I can see little Gracie. It is pretty embarassing. I feel like the biggest goober ever but they don't seem to mind at all.

Holding Her Own

We went to see Gracie this morning and we got to hold her for the first time! She must know Mommy's voice really well because when I was holding her she kept straining and straining to keep her eyes open. She wants to see what Mommy looks like. She kept trying to keep them open but they were really sleepy eyes. The doctor we talked to today seemed really excited about Grace's progress. Basically she is breathing the same air as you and I now. They started up her feedings again today with the feeding tube and they expect that she will be able to digest the milk now every time. Once that seems to be going well, the next step he said, is to get her to breastfeed. That may take a few days for her to get the hang of it he said. They seem like they are more willing to give us some time lines now. Maybe we'll be looking at coming home soon.

Off the Ventilator

Here is a picture of Gracie from 9/24. The white bunny is a gift from Nana. It is so adorable. Gracie is going to love it. On one of the bunny's ears it has her name embroidered in pink and on the other ear it has her birthdate.

Still Finding Time for a little Humor

Here is a picture of our nephew Marshall just as he came out of his surgery yesterday for another cochlear implant. Hubert & his brother "claim" that they are trying to entertain Hallie. They're the two bozos with surgical gloves on their heads. As you can see, though, I am pretty sure the only ones they were entertaining were themselves.........

Leaps and Bounds....9/24/08

Well, we have more good news to report. Today they took Gracie off the ventilator completely because she is doing so well. So she is breathing on her own. I just spent the last hour with her and she was breathing so well and was resting peacefully making sweet little baby faces, moving her mouth some. Her eyes are still closed. She is completely off the morphine but more than likely still has some in her system so she is still pretty tired. They did a chest x-ray today and an abdominal ultrasound and all came back with good reports. Your prayers for little Gracie are working! Her lungs look good and her one good kidney still looks good. The doctor says she is making lots of urine. It is looking like she may need surgery though, to get rid of the bad kidney. It seems to be keeping her blood pressure high. The doctors here are so amazing. We have been here 5 days and every day we seem to meet another one of the doctors working on her case. They know SO much and we are so glad they are taking such good care of her. We just can't help but feel like little Gracie will continue to get better. It opens your eyes to your many blessings when down the hall from us at Ronald McDonald are a boy with a cancerous brain tumor and another boy with spina bifida. We have so much to be grateful for. Tonight hopefully we will see Diana, a friend of mine from Corvallis who just happens to be a volunteer at the Ronald McDonald house.

Encouraging News.....9/23/08

This afternoon the doctors took Gracie off the oscillating ventilator (which is kind of like the big guns for ventillators, it keeps her lungs super inflated and kind of jostles her a lot and so that is why she has to be on the morphine) and now they have put her on a conventional ventilator, which we are under the impression is a really good step since the oscillating ventilator is more for very, very critical babies. The nurse said today that instead of being at the bottom of the hill we were maybe 45-50% up the hill. Yippee. They have weaned her NO2 down to 4.5 so she is almost to come completely off of that and they have taken her O2 down as well, from 50 to 33% (she needs to get to 21%). The other big thing that is just starting to happen is they are beginning to wean her off the morphine, which means she will start to move more, breath more on her own, and hopefully open her eyes soon. Gracie took 2 more feedings of breast milk from the feeding tube. Maybe soon I can hold her.......

BlogRoll 9/23/08

Today we saw Amy and Phillip (Hubert's brother) because they were up because their son, Marshall, is actually having another cochlear implant put in this week here at Doernbecher. So we got to spend some time with them and we will see them again today.

A typical day for us is we usually go see Gracie a couple of times later in the day and just take it easy around the Ronald McDonald house in the morning. It's hard for me to do a lot of running around so I try to rest in the morning. The nurses seem to get their orders for the day around 11:00 so it seems if we go later in the day they have initiated Gracie's changes for the day and we get to see more how she is doing. Like yesterday, we saw her a couple of times in the afternoon and then we went to see her again at 8:00 p.m. The last time was kind of exciting because by then they had her all switched over to her new ventilator and had made several changes to her gases and so forth.

The Ronald McDonald house is actually very nice. They set it up to feel more like a home and so it has kind of a homey feel to it. I like it because it is "relaxed." At a time where nothing seems to be so relaxed, it's nice to come here. And all the people are really friendly, except for that one weird lady. She just reminded us that indeed we are in Portland. Everyone pitches in to help out around the house - we have to do one chore a day. Of course, Hubie is pulling my weight for me since I can't even get out of bed without his help. In the middle of the night he hears this distressed "help" and he comes over to help me sit up. I had the humbling experience of shopping at Fred Meyer the other day via one of those little scooter seats. Hubert tells me I look like a little old lady all hunched over and I tell him "well I feel like a little old lady too!" How any woman with a C-section takes care of a baby I'll never know. It's a good thing Gracie is being taken care of right now because I can barely get myself to the bathroom...

Honestly, though, the experience has been scary but overall I have to say that in a weird sort of way this has been a good experience. It has really brought Hubert & I closer together as we have trudged our way through this. We have witnessed so many little miracles and felt so loved and cared for by friends and family. Just yesterday a complete stranger brought us a ton of groceries. It was Krissy's aunt. Somebody she didn't even know but she felt compelled to reach out and do a kind deed. It warms my heart. So many of our friends and family have visited us and taken care of the kids. I can't imagine feeling more love than I do right now and I can't even imagine feeling more love for little Gracie than I do right now. Seeing her have to go through this just expands my heart so much. Usually it takes me quite a few midnight feedings before I get there because "nurture" hasn't always been my middle name. But I just want to hold her so bad and never put her down for anything. I have truly felt my Heavenly Father guiding us along and lifting us up so much.

Everyone really seems to love the name we picked out for her. It's been Grace all through the pregnancy but we kind of like to wait until the very end until we commit to the name. I always kind of second guess names - is that really the name we want? Even now, I still kind of do that with Mackenzie. Was that the right name? But Gracie just really fits her name. When we were first pregnant with Mackenzie we asked my niece, Madison, that passed away from lightning, what we should name her. She said "Grace Ann" Except in the South you kind of say it like "Graceannnn" with a big inflection at the end. Hubert calls her "Gray Sand." At the time we really didn't like the name that much but for some reason right from the beginning with this pregnancy, we just knew she was going to be Grace Ann. We tossed around a few other ideas, but I like to think Madison had a part in naming this one. I love Gracie, which is what we will probably end up calling her most of the time.

Doernbecher NICU

Bend NICU

Gracie Right after Birth

Update 9/22

Today they weaned Gracie's nitric oxide down from 15 to 8.7 and they are going to continue weaning through the night. Her oxygen level that the respiratory machine provides is around 48% right now and she still has to go down to 21%. They have taken her off the dopamine, which was stabilizing her blood pressure, so that is good that her blood pressure is now stabilizing on its own. They took her off the bilirubin lights today so they have uncovered her eyes. Before she was wearing a little mask and so we couldn't really see her face. She is quite swollen though from all of the fluids being pumped into her. The other big thing that happened today is they started giving her my breast milk through a feeding tube. Before she was only getting IV fluids. So far, she seems to be digesting the milk so that is a good sign that there is not a blockage in her intestines. Just lots of baby steps. They have to take things slowly and do one little thing at a time.

Ronald McDonald

We are staying at the Ronald McDonald house. It is kind of like a cross between a college dormitory and a house. It is such a blessing to be able to stay here. We are super super close to the hospital which is so nice in my condition recovering from surgery and all. Everything here is set up like a house with couches, a kitchen, computers, TV's, basically anything you need is probably here. We have a small room but it is sufficient and the bed is actually not too uncomfortable. I have always seen signs around about the Ronald McDonald house but you can't really appreciate it until you are here during a time like this and then you understand. There are so many families here in similar situations, all going through different yet similar situations, but many much, much worse than ours. I'm going to try to post some pictures later today if I can figure out how to get them off my camera.

Update 9/21/08

This afternoon we went to see Gracie and spoke with a couple of her doctors. They said this evening they were going to turn down her nitric oxide as part of the weaning process. She is currently being supplied at 50%. When we went back to say good night to little Gracie though, about 7:30 p.m., the nurse on duty then said that they were not going to turn it down. Something about giving her another night of no-stress. Not sure why the change. We talked to Gracie and told her good night and she seemed unusually responsive. She kept tightening her leg and trying to move. She opened her little mouth and her tongue was moving around. I think she knows we are around now and wants to let us know that she knows. She is responding to Mommy's voice. We are not supposed to stimulate her very much though so we just stayed for a few minutes and then left.

Grace Ann

(copy of email sent)
Dear Family and Friends,

I'll start with a recap for those of you who haven't been informed yet, our little girl Gracie was born around 3:00 in the afternoon on Sept 18 weighing exactly 7 pounds. She had to come via C-section because there were complications again and Gracie was not responding well to labor. I went into the doctor's office on the 17th because I had begun noticing pain in my abdomen again and suspected that I was gaining too much amniotic fluid again, as is what happened earlier in my pregnancy. My suspicions were right, I got sent for an ultrasound the same day in Bend and by the evening the doctor said I needed to come to the hospital right away because the baby needed to come out. As far as my AFI (amniotic fluid index) anything above 25 is considered abnormal and mine was a 41. So I was very large. The doctors tried to induce labor but after 12 hours my body was not responding and the baby's heartbeat was unfavorable, so they ended up taking her by C-section. I was extremely nervous about having to have surgery and really did not want to have to undergo that, but the surgical staff was wonderful and to be honest, the surgery ended up being the easiest part of the whole ordeal.

Gracie has some complications which is part of the reason I had so much amniotic fluid. One of her kidneys was not functioning and it was very enlarged, about twice the size of the other kidney and distending her abdomen making it very hard to breath. The other complicaton was that at birth her lung pressure did not automatically equilibrize and she was not able to breath well on her own. Things seemed okay when she arrived, but her condition began to deteriorate and she had to be transported to the NICU at Bend because the Redmond hospital was not able to stabilize her condition. There she had to be put on nitric oxide to help her breath and the Panda Team from Doernbecher Hospital flew in to Bend to take our little girl back with them to Portland, Oregon.

Right now Gracie is in intensive care, NICU, at the Doernbecker Hospital.

I got discharged from the hospital on Saturday and we came up to Portland to see Gracie and are staying at the Ronald McDonald House.

Gracie is stabilized now. She is not yet able to breath on her own. They have her on an oscillary respiratory machine and that is the biggest concern right now, getting her to breath on her own. They have her sedated heavily with morphine and she is on dopomine to stabilize her blood pressure. We are very thankful that she is stable right now and in such good hands here at Doernbecker. She has a team of about 19 doctors attending to her and she is in the best hands possible here.

Hubert and I are able to go visit her at anytime. There really isn't a way for others to come visit. Her condition is very critical and of course, more visitors could put her at risk for any infection and that would be very bad under the circumstances. There is no window from which to view her. She is in strict ICU and we have to scrub in to our elbows just like the doctors to see her and we can't hold her and touch is very limited at this point. After seeing her with all the needles and machines hooked up to her, we understand that this is going to be a long recovery process and one that won't resolve quickly. We appreciate so much all of the concern and care that has been shown to us regarding Gracie. I really appreciated the hospital visits as well. I really can't tell you exactly how much it has meant to me, but please know that it has meant so much. And too, all those who took care of our kids while we were in the hospital have lifted such a huge weight of worry from us about having to be concerned about Mackenzie and Caleb at this time. So many just took over and helped out and we did not have to think about them. I have felt the power of your prayers and have felt the Holy Ghost strongly around Gracie protecting her.

At this time, Gracie just needs many, many faith-filled prayers. We are so comforted to know that our ward and others are praying and fasting for her. Hubert & I strongly believe in miracles and know that with Faith in God and his Son Jesus Christ, all things are possible. I am convinced that the miracle we saw earlier in my pregnancy, with this complication just suddenly "resolving" is still just that. At 28 weeks if this condition with the amniotic fluid had continued, Gracie surely would not have made it to term. By this problem resurfacing so suddenly again at 37 weeks, it has really given her a fighting chance. The doctors keep saying that the good thing is she is strong and a healthy weight, so we are hoping with time her lungs can get strong enough to work on their own. If she were premature and battling the same circumstances, the outcome might be much different and harder for her.

We will send updates via the email as we have access to a computer here and are more than happy to get emails from you as well. We would love to hear from you. We have a trac phone given to us by Hubert's family but it has very limited minutes so we are saving those for his family in Lakeview and my family in TN, and we can't use it in the hospital anyways so it is probably not the best way to get ahold of us.

We love and appreciate you all and so greatly appreciate your prayers for little Gracie. I wish I could attach a picture to this email to show you how cute and sweet she looks, but I did not come prepared to get any of the pictures off of my camera so they are all sitting here but I can't access them.

With love, Hubert & Jodie