Tuesday, December 30, 2008
Here's our lovely house. Note the height of the snow piles in relation to our house...
And Juliet, ready to come inside after a couple hours of shopping!
We also got to eat out! NUTS! We haven't eaten out since she first came home from the hospital and my parents watched her while Matt and I went to Outback Steakhouse. We went to Jalisco's for lunch and she did so well! She even ate about a smidge of refried beans. She sat up in the high-chair and played with napkins the whole time. She also squealed a lot and it was a tad embarassing when she'd screetch loudly enough to make our ears hurt... :-)
Friday, December 26, 2008
So, those are this weeks cards. Obviously, I did not get much done :-)
Other fun stuff:
Matt's Halloween costume:
I made both their costumes with a sewing machine and cheap cloth. It was loads of fun. I cant find any pics of Juliet or I, but I'll post them when I get a chance. Also, I have pictures from Christmas, but have yet to upload them. We got some really cute ones!
Tuesday, December 23, 2008
Saturday, December 20, 2008
So one of the things I like to do is create Memory Verse cards. I got this from my Grandma Nancy who makes the most AWESOME memory verse cards.
This particular one uses a picture of Joseph's eye as a background. I'm going to be trying to do this every day, so I'll probably post them once a week, with all the images linked. If you want them, feel free to snag them!
Juliet is doing great today. I think she has a runny nose, but otherwise is doing well. She's watching Joe play with a magazine at the moment, and they're playing with each other through the mesh in her pack n' play. Darling!
Joe adores his 'sissy' so much! She was crying earlier and he ran into the room where she was and said "ooooooooh.... 'Let! 's OK! no owwieee! oooohhh..." Translated it means "Oh, Juliet, you are OK! There's nothing wrong (no owie)! You don't need to cry!"
He's just such an awesome big brother. Aside from the occasional snatching of a toy away from her when he feels it's actually his.
Thursday, December 18, 2008
Wednesday, December 17, 2008
I have started a blog at http://slatosky.blogspot.com/
I will post random updates there, possibly pictures at times.
I will post urgent updates here, so that everyone gets an email if something happens and we need immediate prayer.
So far things have been amazingly smooth sailing! Juliet is growing soooo fast! She's learning how to sit up on her own, and enjoying playing with toys. She's particularly fascinated with a big fuzzy cartoon character thing we have that makes strange noises and dances.
The funny thing is, Joe is scared to DEATH of the thing. Cries when he sees it, screams, etc. Juliet ADORES it. She hugs it and slaps at it and giggles madly. One of our cats wants to eat it. Yes. Eat it.
I will probably be able to post some video to our blog of the various interactions with the crazy purple creature.
Also, serious prayer request.
Two of our dearest friends had their son on the 11th. He passed away a few hours later, and it was totally unexpected. He was a healthy boy, and circumstances surrounding his birth resulted in his being deprived of oxygen, and there was nothing the doctors could do. Please pray for the family of little Joshua David and for continued strength for them. Please also pray for his beautiful mamma as she heals from surgery. His memorial service is coming up soon too, so please pray for extra strength for them on Monday.
Thursday, December 11, 2008
Life has been pretty good, as far as Juliet is concerned. She is blossoming into a beautiful, healthy BIG baby ;-)
I have updated a couple of new pictures that we took- her first bath and some of our 'professional' pictures that we took in our basement and I edited in Photoshop.
Our breastfeeding relationship is absolutely excellent! She gained a pound in a week, and she has been eating very well. She actually prefers to breastfeed over bottlefeeding. Her speech therapist was very happy with her progress. Her pediatrician is also amazed at her progress- whenever we see him he puts his hands on his hips, looks at her, shakes his head and says "Amazing. She just looks so great!"
Our son, Joseph is loving her very much. He's always trying to soothe her if she's upset or wanting to hold her (only if we put her in his lap, monitored). Occasionally he does things he shouldn't, like trying to rock her in her swing faster than it's meant to go. She tends to either want to be held or be in her swing- all totally normal. We do try to hold her as much as we can, but it's hard to cook even if she's in a sling.
One of our cats, Star, has taken a liking to her. She likes to curl up next to us, touching both of us, when I pull Juliet into bed in the morning. She tends to linger wherever Juliet is, but never 'too close'.
For Matt and myself life has been chaotic. I am starting to settle into a routine each day, but something always disturbs it. The other day Matt's battery in his car died while he was out shopping. I had to pile the kiddos in the car really fast to get over there and help him out. Of course we'll have to buy a new battery- which in a Mazda is pretty pricey. Think: Our grocery budget.
Then, yesterday, the sink stopped draining and the dishwasher won't drain. I'm having to wash dishes in the tub, or one at a time very slowly in the sink (it drains monumentally slow). We may have to get disposable dishes until we can figure out what to do. My poor hubby is so stressed out by it all, and feels like we're just having one bad thing happen after another. I guess I see it differently... I mean look at Juliet! It's horrible what has happened with her- but she's doing SO well! And the battery- at least it didn't happen in Pocatello or something! ...the sink... well that pretty much sucks, but we'll figure it out.
Joseph is going to go up and hang out with his Gramom and Grampop for a few days. It'll be nice for us because it will be easier to catch up on a few things, and easier on him because he'll get more outdoors time. When I told him this morning that they are coming and he's going to get to hang out with them for a few days- he was super-excited. He was practically jumping up and down! Hehe... I'm sure he's probably been rather bored with all of his 'unstructured free time'.
Well, that's all I have for now. OH! Another good thing! I'm getting more sleep! Juliet doesn't wake up as frequently in the night anymore. In fact, it's pretty predictable. Usually she goes to sleep around 11-12 and wakes up to eat at 4-4:30. She eats and falls right back asleep. Then at about 6:30-7 she wakes up again. We both doze off a little in the bed and wake up at 9am for good. It's working out well for both of us- and Matt doesn't have to get up in the night anymore to help me, or get up because of her crying. She pretty much falls right back asleep and he snores through the whole feeding. Yay!
We had her cardiology appointment this week, and she looks great! Dr. Williams was unable to get a good EKG on her because the machine was not working properly, but her heart sounded great and her chest x-ray was excellent.
He showed me her chest x-ray and pointed out her intestines. He said "She's got gas! Fair warning!" Sure enough, you could see the gas in her intestine. It was rather funny (but not funny on the car ride home).
Her next cardiology appointment will be in 6 months- no need to see her any sooner! She's also been given the all clear to treat her like any other baby as far as colds and such go. Standard hand-washing and keeping her from obviously sick people. This means I get to go back to church every weekend, since it's ok if Joseph gets sick- it's not the end of the world if he passes something along to our girlie.
Sure enough, the instant I get the all-clear, Joe picks up a stomach bug! Hehe... So far it's only Matt and Joe who have it- Juliet and I seem to be okay so far.
Well, that is all for now. I have posted a couple of pictures to the gallery for your viewing pleasure! She's got excellent head control and likes to sit up and look around now.
Yay! Juliet gained weight! She's over her birth weight now.
I also see a small area in her incision that has me a little worried- it's kind of white and has redness around it. The home health nurse is going to come by and take a look at it to make sure it's not infected.
I keep meaning to upload more pictures, and keep forgetting/getting distracted. My goal is to do it sometime today ;-)
Wow... one sure can get busy taking care of two kiddos!
Juliet is now applied for the Katie Beckett program to get medicaid. I sure am hoping that she will qualify, because we've gotten some awesome medical bills. Lessee... One says 110,000. Another, 18,000. Another- 6,000 and yet another 14,000. I'm sure it's just the tip of the iceberg. I saw the 110,000 one and started laughing uncontrollably. It was 15 pages long, small font. 20% of that is still 22,000- so yeah, we definitely need medicaid or else we'll do our best paying $20 a month for the rest of our lives ;-)
We saw Dr. Groberg on Friday (thank you for the recommendation Nathan and Shanna Hardman!) and he was great. He was very informative and nice. We've had a lot of great professionals helping us out- the Infant and Toddler Program folks, the Idaho Falls Home Health and Hospice staff, the Speech Therapist, the staff at Praxair. Everyone has been very nice and informative who've been part of her home care.
Our family and church have been awesome too. The Perrys came over with some of the kids from church and pulled the weeds in our yard. It was such an immense relief, as our yard was looking simply AWFUL after being away in Utah all that time, and we'd never really gotten to spring cleanup since I was in prodromal labor for about a month before Juliet was born. They did SO much! It was such a blessing. The Perrys also brought us dinner last weekend since my hubby winds up helping me out with the kiddos all weekend instead of either of us cooking or getting much done. The Davenports brought us a HUGE lasagna dish last night along with salad and chips and strawberries YUM!
My mother-in-law has been coming over and helping out when Matt is at work, so I've got two helpers during the week- Konni and Nancy. Between the two of them I actually get to sleep in a little in the morning! Very useful after being up every hour all night ;-)
Konni helps entertain Joe, she loves to take him and play in the water in the back yard (though our pool has only just been re-setup since it got gross while we were gone), read to him and play with his toys with him.
Matt's mom helps straighten up and give me pointers on how to maintain things most efficiently and is a pro at helping out with bottle feeds and tube feeds. Between the two of them helping me I manage to spend time with Joseph pretty well so he doesn't feel like I've abandoned him for the "Beebee".
Joseph still has issues about her presence, he thinks I should come running if he cries just as I do for Juliet. He also is picking up other things she does like trying to suck on my arm or shoulder, climbing into her bassinet when it's on the floor.... We try to get him to be a 'helper' and tell him all the time that he's a great big brother (especially when he gives her kisses!) but it will take time for him to adjust.
We've got our visit in SLC on Wednesday. My mom may be able to come over on Monday to help out- but she's got a whole lot to do to get ready for a trip that she and Dad are going on. Boy do they need some time together! She was with me for all that time Juliet was in the hospital and Dad had to work. I'm glad they get time together.
Juliet's crying! Gotta go!
*edit* Weird... It read "m0ther" as a curse word and censored it! I know in some relationships "m0ther in law" is the same thing as a curse word, but not to me!
Soo.... I haven't posted in a while.
Juliet is doing well. She had a hearing test, and passed it. She's no longer on a pump for feedings, she's being gravity fed through the tube. She does not swallow, and it's hard to tell why, so they are going to do the swallow study tomorrow sometime around noon.
We've attempted breastfeeding, but I don't think she's really been hungry enough to put forth a proper effort. It's the same with the bottle feeds- she's just not doing it.
With her oxygen, she's doing better and better, but when she's deeply asleep she still drops in her o2 sats.
I learned how to put in the nasogastric tube today, and managed to do it on my first try. I've learned how to give her medicine through the tube and how to do her feedings.
So the plan is to send us home tomorrow. Crazy, huh? Hehe... I'm nervous about doing all this at home, but I know we can do it. It's just that I have about a bazillion questions for during discharge tomorrow. Of course this is all provided there's nothing going wrong during the swallow study tomorrow. We'll see!
Matt will have to leave tomorrow, regardless. If we have to stay longer without him, I think I'll go slightly nuts. I just don't know what I'd do without him... Well, here's hoping we can go home tomorrow!
I don't know why it is that I seem to post updates and they don't post despite clicking 'post' two different times on two different screens. Ugh!
Anyway, We're home! We got home on Tuesday night after a grueling drive in the truck hauling an RV. My mom is such a trooper for driving the whole way home... I would have been a tight ball of nerves.
Juliet is still using an NG tube and oxygen. We have a concentrator in our home for the oxygen and I know how to place an NG tube all on my own. It's hard to do, not because it's difficult but because Juliet hates it and I think it hurts a little. Thankfully I only have to do it once a week or if it comes out.
Joseph came home yesterday with his Gramom (Matt's mom) and she's been here helping us out- even with the 2 am feedings. Joseph is very sensitive about the situation and seems to like Juliet, but is having a hard time understanding when she cries or when I need to give her my undivided attention.
Some of her steri strips (covering her incision) have come off and the healing skin underneath is visible- it's amazing how thin the mark is, and how well it's healing. She's still got the strips at the top and bottom, but there's a big gap in between where you can see her skin where they opened her chest.
She is always gazing around with those big eyes of hers. We can't decide if they are currently dark grey or very dark brown.
I'm having a hard time being home. It was comforting to have alarms to tell you if something was wrong, but here all I can do is look for her chest rising and falling when she's asleep. Sometimes she breathes so shallowly that my heart skips a beat for a second until I get closer and see that she's breathing. Last night I was in tears because nothing I was doing was helping her calm down, and she had a full stomach, as far as I could tell all her needs were met. I was on the verge of giving her some Lortab in case it was pain when Nancy came in and offered to rock her and walk her around for a bit. I'd been awake for almost three hours after having maybe an hour or two of sleep when she offered, so I gladly accepted. I just want so badly to get us to a point where she's eating normally and breathing on her own so that it is easier on us both. I can't imagine it feels very good to be force-fed.
We had a bit of a mess-up on the night that we got home. Matt was unloading the car and missed her medications in the back seat. Keep in mind that this was bordering on 48 hours awake for him after being in a bouncy truck with a squalling baby, and knowing he had to go to work very early the next morning (about 3 hours later). She was due for Lasix and Aspirin the next morning, but I didn't have any way to give it to her since it was in the truck (which was hooked up to the RV) in Rexburg. My mom can't unhook the RV all on her own- it's not a one person job.
My mom called dad and told him the situation and he left work in the middle of a meeting to bring the medicines to me. I am so thankful that he did that, and nice of his boss to be understanding about it.
Well, I'm going to go, almost time for her next feeding.
Another eventful day!
Her drainage tubes were removed, and she's down to one IV line, her pacing wires, her feeding tube, and her nasal cannula.
We've also moved out of the ICU!
We are in room 3087 and the number to reach here is 801-662-3087
We're up to visitors (so long as you are sure you're not sick) and it's a lot more quiet and comfortable here.
The one downer: Juliet is not doing well when she's on room-air only. Her O2 sat drops whenever they lower her oxygen, so we are hoping she'll learn to breathe more deeply without it.
The NP said that they'd probably do the swallow study on her on Monday, since it's too soon since her respirator was removed to do one today. Once they determine that her swallow reflex is working we can continue trying to get her ready to be home.
*Juliet was extubated, and is doing better without the respirator than she was when it was in.
*Her Foley Catheter was removed because she had plenty of urine output and has been getting rid of her swelling easily. She's also been taken off of lasix(sp?)
*She had two central line type tubes taken out that had been leading directly to her heart.
*WE GOT TO HOLD HER!!!!
Great day, praise God for his grace! She's a tough girl alright, and has a strong will to live. She's been having a lot of pain from her drainage tubes (which may come out tomorrow) but they give her morphine to manage it. She sleeps a lot, but not as much as she was before the surgery. The doctors seem pretty amazed by how quickly she's progressing. Happy day!
Juliet continues to do well. She now has a feeding tube (as of an hour ago) and has been taken off of nitrogycerine and dopamine. She's also been taken off of the paralytic and is only a little sedated. She expressed her extreme displeasure with getting her feeding tube inserted, even though they'd given her quite a bit of morphine to make sure it wasn't painful. She attempts to open her eyes when I come close, but the swelling around her eyes makes it difficult and she gives up after a few tries. She gripped my finger pretty hard when I was comforting her while they were putting in the tube.
Right now she is sleeping, and that is what she does most of the time. Her chest is still closed, as her swelling has not been too bad at all. I got to see an x-ray they took to see the positioning of the tube. It's crazy to see all those different leads they have going into her body. We could see the drainage tubes and pacing wires, other wires that take readings...
I'm working on an origami electra for her pod. It's a geometric sphere and I'll be coloring each module by hand. It will be a nice little stimulating thing for her to look at when we are not here.
Again, thank you for all the words of support and all the prayers. God is watching over her and we have a great deal of hope from how well she's doing.
Sleep eludes me. Hence the 12:35AM post.
I had planned on getting some sleep and then updating in the morning, but now is as good a time as any!
Juliet is doing very well. She came out of surgery just fine. As posted earlier there was a hole still in her ventricular septum that needed to be repaired, so at the end of her surgery they put her back on bypass and repaired it again. When they did her echocardiogram there was just a tiny hole left, and it is small enough that in most children such a size of hole closes on its own. Even if it doesn't heal on it's own it's not something that would cause a future surgery- it just bothered Dr Burch that he didn't get the whole thing. He explained that with how small she is, being a newborn, that it's very hard to do the repair down in that section and that they did do enough to where it would be no problem for her.
He feels confident in the alignment of the coronary arteries, so I infer that that means there is little risk for stenosis there.
Other good news! She was in good enough condition to try closing her up. Her swelling was not a huge amount, and so they closed her chest and will wait and see how things go. If the swelling increases they will have to reopen it and leave it that way until the swelling is down, but for now things look peachy. There have been no big signs of arrhythmia, so she is basically doing things totally textbook for them.
After he spoke to us we went to go eat (since it would be unlikely we'd feel like it after seeing her in her current condition). We went back to the Ronald McDonald House to eat the meal that volunteers were cooking for us (I think it was the university, I'll double check another time) and it was excellent lasagna, salad and breadsticks. We gathered up a few items to stay overnight in one of the PICU sleeping rooms and headed back.
We timed it perfectly. We got back right at the beginning of shift change and could not see our girl :-/ So we went and played Nertz (sp?) for an hour. Matt kicked our trash, just like he did when we played while waiting for the surgery to end. Card games are such a good way to take your mind off of things....
Finally we went in and saw her. I had tried to prepare myself, gone over what I'd see in my head over and over- I even imagined it would be worse than it really was. None of it helped. I don't really cry much, or easily, but I found myself crying again.
She is pale and limp, swollen (but not as much as I thought), and very chilly to the touch. There is a patch on her chest and chords coming from the patches. These are pacemaker leads. There are small drainage tubes one either side of her chest and one large one draining from the bottom. There's another tube that drains another kind of fluid (totally forget on this, they said it is kind of like plasma) and she's hooked up to something like 12 infusions through her IV's. There's still central lines going into her umbilical, and they plan to remove those tomorrow (today).
Of course, she's intubated. She's not breathing at all on her own right now, but that is because she is completely sedated and the anesthesia of course has residual effects. She's on a muscle relaxer, a pain reliever and on aspirin for blood thinning. Tomorrow they will begin slowly letting her regain some consciousness, but not so much that she can cause damage to her chords from movement. She twitches a finger or toe occasionally, but that is all.
We have taken pictures, and we will post them soon. Maybe even this morning.
My mom went back to the RV to sleep. She's been so tired and stressed from all this, at least as much as I am. She's not feeling well and has a lot of aches in her body- so please add her health to your many wonderful prayers.
The most critical time for Juliet is this first 48 hours. That's why we are staying here at the hospital, because if she goes downhill they want us right here. Scary stuff. Well... Off to try to sleep.
Wow... so I thought I'd posted updates, but apparently I forgot to hit the 'post' button the second time. :-/
Ok, so Juliet went into surgery at 8:30am this morning. At around 9:30 or ten they informed us that they had just started surgery and were switching her onto the heart-lung machine. A while later the PN came back and informed us that she'd been operated on for her septum defects, and they were beginning the arterial switch. The latest news is that they are finishing up the arterial switch and she should be off the bypass soon, and then they will watch her for an hour for any problems. Then it will take another hour to set her up in the intensive care unit.
From this morning: The surgeon came by and talked about possible risks. First was death, he said relatively small risk. Then there's the risk of bleeds and arrhythmia. Those are risks simply of open heart surgery. Then there's the risk associated with THIS type of surgery for stenosis, or narrowing, of the coronary arteries. The coronaries must be perfectly lined up or they may not grow properly and would have to be widened later.
Also there is a larger risk (about 25%) for a problem with the septal defect. The septum can grow in such a way as to partially block the valve and cause problems. This is either recognized right away or much later.
Well, I guess that is all for now. I will post again when they say that she is off bypass and doing well. This is the most nerve-wracking time for me, because any problems are revealed when the bypass is removed and they see how things are functioning.
Last night was good. Juliet was held by her Nana and Pop-pop and we took pictures. Some of them are in the gallery. I am quite sure my mom was beyond elated to finally get to hold her grandbaby girl.
When I had skin to skin again she was not happy. She wanted to suckle very badly, but it's not permitted until after the surgery because the bloodflow to her intestines is not the way it should be from the defect and eating food can cause catastrophic bowel failure. It is so hard to see her want to eat so very badly and be unable to help.
I am pumping quite a bit of milk for her, and when she can eat there will be plenty to give her.
This morning she is doing well, very calm and unagitated. I am about to hold her for a while after giving my mom and my hubby plenty of time this day.
Surgery is still scheduled for Monday, but they are saying 8:30 am.
Kristen (who left a message on the message board) came by to speak with me. I really appreciated the chance to hear her son's story and know how well things are going with her little cutie. It gives me hope to know that he is healthy and his heart is strong, because that means my daughter could have the same outcome.
Thank you again Kristen for stopping by, and I'll be giving you a call to let you know how the surgery went.
I'll no doubt post a bunch of nervous posts on Monday before the surgery is over, but I plan to try somehow to sleep, because if I sleep, then when I wake up it's all over. Maybe it's a bit cowardly, but it may be the only way I'll be able to cope. Probably moot as I will have my mind racing so much...
My hubby seems to be holding up well, he's such a pillar of strength and I'm constantly amazed that God would give me such a gift as he is. In the midst of this I have no number to put to all the blessings in my life. Yes, this defect is horrible, but I know even more what I am bless to have in friends and family, in my husband, in my parents who have been here for us in such a huge way, in my hubby's parents who are doing so much as well, and for my Joseph who they are watching- he makes me laugh and takes my mind off of things with his cheer... Especially for our daughter, because no matter what happens she is such a wonderful blessing to have whether we have her for a week or for a very long life.
We're keeping our spirits up, and we have a lot of hope. We trust God in the skills he's given the doctors and we know that no matter what happens He's done so much to keep her with us and strong. Keep the prayers up for us, we thank you so much for the prayers and the love you are pouring out for us!
Thank you so much to everyone who has already posted here that they are praying. The prayers mean so much and we KNOW God is taking care of our Juliet.
Today we woke up at the Ronald McDonald house at 8:30am. I'd not slept well last night because of a combination of worry and a painkiller that makes my heart race (the site of my epidural is very painful because of how hard a time he had getting it in). Our shuttle to get to the hospital leaves at 9AM, so needless to say we rushed very quickly to get downstairs.
We got to the hospital and headed straight to Juliet's bedside- and she looked excellent! I noticed that two of her readouts were missing from the monitor- it turns out she no longer needs to have two oxymeter readings because the pre/post O2 sat reading is not useful in her case. They are also reducing the medicine that keeps open the natural passage between her aorta and pulmonary artery. She has septal defects that are mixing her blood well enough to not have to keep such high doses of that particular medicine. Surgery is still planned for Monday and everything is looking like we are fine waiting until then.
At 11am I went to pump breastmilk and actually got enough to collect! I am very determined to give her breastmilk and the hospital is doing everything they can to help make that happen. It's the best thing for her especially in her situation. They have provided every way they can to make it easy and I am finally getting my milk in, so they can feed it to her after surgery. Right now she is nourished by a mixture of vitamins and fats that keep her going until the surgery.
From 11:30 to about 12:30 we had skin-to-skin contact, I held Juliet against my bare chest and she was very relaxed and happy there. We can't actually nurse, but this helps us both- for bonding and for my hormones in producing that immune-boosting milk.
From 12:30 until 1pm Matt did the same, for bonding, that she can smell him and look up into his eyes (as much as she does so... she is not much into opening her eyes. I suspect it is a bit overwhelming out here compared to the back of her eyelids).
At one point the alarms went off and her heart rate read at 90 (when it's been reading around 140) and her breathing had slowed or shallowed. Matt was holding her and he says she stiffened up and got really mad. The nurse didn't see, but she said taht when we get mad our heart rate drops and we clinch up and breathe less. This is probably what happened, but she's going to keep an eye out for it happening again.
Also, Matt's coworkers sent a beautiful bouquet of balloons! They were simply enormous and they are now next to her bed. There was also a cute teddy bear. People were pretty impressed by the size of the arrangement, and I had never seen anything like it. So, if any of y'all from ISU Tech Services stop by here, thank you! They were lovely and they really brighten up her space. It is her first teddy bear and she'll have it in her crib when we go home. We'll be able to tell her about all the people thinking of her and how that teddy bear was given in the hospital.
I guess that is all for now. I will no doubt have pictures tonight! I have already gotten quite a few good ones of the little expressions she gets and will have some of my mom holding her (perhaps dad too!)
Well, here is my first update. I am going to start from the beginning, and tell the story of my beautiful daughter's birth.
My husband and I became pregnant a little sooner than we'd planned. We'd wanted to space our kiddos three years apart, and when I found out I was pregnant the due date was estimated at six days before the due date my son had, which put it at six days after his second birthday.
We had an ultrasound at around 18 weeks that showed a perfectly healthy baby, most likely a girl. As my due date approached, I considered many options for her delivery including homebirth and birthing at a birth center that was recently built in a town fifteen miles from our home.
In the end I chose to deliver at Eastern Idaho Regional Medical Center, as it is where I gave birth to my son, and they were absolutely excellent in dealing with the tiny pneumothorax he had when he was born. I figured if anything went wrong at all I'd want to be there.
My hope was to have as natural a birth as I could at that hospital and created a birth plan including all kinds of things to let them know I wanted things to go as naturally as they could.
I was showing vague signs of preeclampsia around 37 weeks, so my doctor advised that I be induced when I hit 39 weeks just in case.
I went in for induction on June 27th, and the induction utterly failed! I did not dilate at all, I didn't even really have painful contractions. My doctor was performing a c-section on a lady who was in a train wreck that day and decided after she was done that there would be no need to try to go further with my induction. I am glad that she sent me home.
I stayed home for the next week and a half, hoping for my body to go into natural labor. All my warning signs of preeclampsia had disappeared and the plan was to just keep an eye on me and wait for nature to take its course. Finally, at 2:30am on July 7th I woke up from a painful contraction. I had been having contractions for weeks, so I decided to wait and see what would happen. I let my hubby sleep and walked around the house, tried to read, and do whatever I could to take my mind off the contractions. They grew steadily worse until it was hard for me to walk,and I was feeling pretty icky.
We called my parents and left for the hospital.
I began to dilate very quickly. The pain grew worse along with my dilation and I grew very excited as I knew I would finally meet my child and know for sure that she was a girl!
The pain increased and increased, and finally around 6-7 centimeters in dilation I asked for an epidural. I did not want to have one, but the pain was so intense, and I was not managing it well at all. I knew I would be practically useless in pushing if I kept up like this, because I could not seem to control things and would just thrash about in the bed, screaming. Getting that epidural was very painful and very hard on my anesthesiologist, I simply could not hold still. Eventually I got it and began to calm down.
It took me a long time to continue dilation, and eventually was fully dilated with a bulging bag of waters. The water would not break on its own, so we waited some more and my doctor got out of a surgery and was able to attend to me. She broke my water and saw meconium.
The nurse (who was a really really awesome nurse- she encouraged me very much in trying to avoid the epidural) called down to have a NICU nurse come to the room right away, as it appeared the meconium had been there for a long time, and there was a LOT of it. My doctor had me push and in two pushes she was out. The first push brought out her head and they suctioned her- the second brought her whole body.
They began cleaning her and really suctioning everything out, but she still turned blue. They knew something was not right. They brought her to me and I got to touch her and look at her for about two seconds.
They finished with me and my mom stayed with Juliet. My hubby decided to stay with me, as last time he left me to be with our son Joseph.
I was moved to the Women’s Center as soon as I could feel my legs enough to get down off of the bed and into a wheelchair. My dad, grandmother and my hubby stayed with me and we awaited word from the NICU on her condition. At the time I thought it was just the meconium, and knew that could be serious and they’d want to monitor her- so I expected that it would be many hours, possibly days until I could hold her.
My mom finally came back with little word. The staff wouldn’t talk to her- they always appeared too busy. She and my dad decided to go eat, and my dad needed to get back to Rexburg for a couple hours for a meeting.
While they were gone, my mother in law arrived with my son. We hoped to be able to take her into the NICU soon to see Juliet and hung out for a bit longer as I continued to wait for the epidural to completely wear off.
After a while three people came to our room. They introduced themselves- one was a nurse, one was a social worker, and one was a neonatologist.
That is when they told us that Juliet had TGA, or at least that he suspected this. He started by telling us that he had had an echocardiogram done on her, and that the technician who was doing it saw what looked like Transversion of the Great Arteries. He told us she needed to be flown down to Primary Children’s Hospital as soon as possible or she would die. He told us that if we had been anywhere else the problem might not have been found in time to save her life. He said there were risks involved in the flight, and that nothing is certain.
My husband and I were in shock. We cried and my mother in law cried with us. My son didn’t understand what was going on and could only tell that something was very wrong and sucked his fingers.
I called my mother and asked them to hurry back. I told her that Juliet’s heart is messed up and that we needed her back, NOW.
The social worker spoke with us some, and told us about ways that we could be helped through this situation, about the Ronald McDonald House and how great the hospital is.
After we had a little time to gather our senses we went to the NICU to see her. She was completely sedated and almost purple. There were tubes coming out all over the place and alarms going off. She was intubated and unresponsive. I touched her and sat there in a wheelchair, totally dazed.
Some more alarms went off, and the nurse asked us to move back. Suddenly there was a swarm of people around her and I was hearing that her blood pressure was misbehaving and the doctor was asking if there was anyone at all who could perform a surgery NOW. I could hear them talking about how no one was in town or around who could really do the surgery they’d need to do to stabilize her and they seemed agitated. I think they were being a bit calm for our benefit. The last thing they’d need are hysterical parents, or for me to faint. I was sure it was the end, I thought she was going to die right then and there.
Instead, she stabilized. I am not sure what they did exactly to do it, but somehow the combination of medicines they gave her worked and she was suddenly much more stable. They decided she was stable enough for the flight.
At around 6:30pm my husband boarded the LifeFlight with our daughter, with only a t-shirt and some underwear in our overnight pack. I would not be allowed to leave until the next morning.
My husband arrived in SLC with Juliet and rode in a taxi to the hospital while Juliet rode in a helicopter. We thought she’d be having surgery as soon as she landed, but instead she was found to be doing well without the particular surgery they’d have had to do- which would have opened up a space between the sides of her heart to allow the oxygenated blood to mix with the unoxygenated blood and provide her body with enough oxygen to keep going. Apparently, the natural opening (or maybe a defect) was keeping them from having to do that.
About a day after my husband arrived with her they found her able to breathe on her own. When I arrived in the late night of the day after her birth, she was totally breathing on her own and was doing fairly well at ‘remembering’ to breathe.
The next day we were told her open-heart surgery was scheduled for Friday. We were also told that we could hold her!
I was so excited when they told me that that if I were a puppy I’d have wet myself. I literally choked on spit with my outburst of “REALLY???!” I think I almost fell over (delivering a baby is really quite exhausting on the body, go figure).
We took some pictures the next day (the 10th) and continued to enjoy holding our little angel. All of the staff here are just wonderful and are eager to help us hold her and love to talk about the little things she does when we are away.
Right now, she is watched by a nurse who has got one other patient. When she first came in, she was watched by a nurse with no other patients. She is doing so very well!
So well, that they decided that she could wait the weekend and have her surgery on Monday instead, so that some more urgent cases could be taken care of first.
We have so much more hope than we had at first, as we learn more about TGA and the surgery she will be going through. The survival rate for this surgery is very high, and complications afterward are relatively few. Apparently, if one has to have a heart defect, this is one of the best to have. We have every hope for her to have a long, normal life once this stage is over. She’ll need to have a cardiac specialist, and be very careful about heart health, but she should be able to enjoy sports and play like any other child.
I guess that is all for now. I’m rather tired and this has become very long!
Thank you all for your prayers and thoughts. We will want all the prayers we can have on Monday morning, as no matter how we look at it, it’s a huge surgery and very scary. She will look pretty bad afterward and we will not be able to hold her for about a week. After that, she should recover very quickly.