Results from her echo at noon came back really good. Her pressure is now at 41 down from 49 on the last echo, so her pulmonary hypertension is getting better. They will stop her milrinone today, so that's one less med. They are still weaning down her dopamine. It's at 8 now and her pressures are stable around 50. Her hr has been in the 140's today, so much better than 170's!
The swelling in her face is a little better than it was this morning. She could actually get her eyes open a little. Her poor little ears are still so swollen, they look like they are almost swollen shut. The preliminary reports from her SVC ultrasound this morning all look good too, so that is a big relief. Dr. H thinks now that she is back on the conventional vent and she can move around more, her swelling will continue to get better. She also got a dose of Lasix and is peeing up a storm right now, so that will help a lot too.
So now she needs to continue to do well on the conventional vent. Then they can start to wean her nitric oxide in the next day or so. Hopefully she'll get rid of the dopamine soon, and that will be another med gone. That would just leave her maintenance fluid, TPN, lipids, vancomicin, gentamycin, morphine, and versed.
She'll continue the antibiotics for a few days to be sure her infection is gone. She did have one positive blood culture in addition to the positive culture from her right chest tube site. They are repeating her blood culture today and also sending a trach culture from her ET tube.
Once she no longer needs her chest tubes (hopefully in the next few days), they can be removed and we could hold her while she's on the conventional vent. We can't wait!!!
By the way, keep the turquoise pictures coming, they are great!! I also got an email from our friend, Megan, in Lawrence. She took 4 coworkers (all wearing turquoise), and they all donated blood today in Sofia's honor! Several of Kenny's coworkers have also gone to the Community Blood Center and donated blood in Sofia's honor as well. Thanks guys for spreading CDH Awareness and for donating blood - you guys are awesome!!
Her blood pressures and heartrate are better today now that she's had 24 hours of antibiotics, and she is peeing more since her albumin replacements. She'll get a dose of Lasix today to help her get rid of some more fluid too. Her chest and head are still so swollen! She had a positive culture (she has an infection) already last night, so I'm sure that had a lot to do with her low b/p's and high hr's the last couple of days. Turning her yesterday afternoon released a bunch of fluid from that left side of the chest, and she immediately started doing better with everything, so it's kind of a combination of things that's really helped her.
At any rate, it looks like she's trying to turn the corner. She's still really sensitive to position changes and desats to 70's-80's occasionally when she's on her right side. On her chest xray this morning, there is more fluid accumulation and less air around the left lung, so hopefully that air leak is resolving, and now some of of the fluid will start to reabsorb and that will get better.
She also had an ultrasound of her superior vena cava (SVC - large vein that carries deoxygenated blood back to the heart from the upper body) this morning to rule out the possiblity that an obstruction of her SVC could be causing all the swelling in her chest and head. This is a scary condition that could be caused by a number of things. We may have results back late this evening or tomorrow. I'll post more if anything develops with that, but we'll hope this isn't the case.
I'm so excited because in rounds today, they started talking about when to do her post-op MRI. She's never had one because she's been so "hooked up" her whole life, so she couldn't make the transport down to radiology to go through the machine with all of it. They want to do it when she is about ready to come off the conventional vent, so they can sedate her more easily while she is still intubated. Then after they do her MRI, she might be extubated. Dr. S threw out possible MRI on Thursday today, so that would mean they think she might possibly be ready to be extubated as early as Thursday or Friday of this week!!!! We might get to hold her in a few days!! I'm so excited. She's 3 weeks old today, and she's never been held. It makes me so sad for her. Hopefully she'll continue to behave and take big strides toward being tube free!!
They were able to wean her oxygen setting on her vent down to 34% late this afternoon. Her blood pressure has improved and is back up to 45-50, right where they want it to be. Her heartrate has come down from the 170's where it's been the last couple of days to the 150's. And her O2 sats are 97-100%. She has been doing so well, Dr. J was finally able to start weaning her high frequency settings a little tonight. Her MAP (mean airway pressure) was able to come down to a setting of 14 from 16. This just means she is needing less support from the high frequency ventilator. Her oxygen only had to be increased to 44% with this change to keep her sats in the upper 90's. If she continues at this rate, she may be ready for the conventional vent in a day or two! Go Sofie!! She wants to be off high frequency so she doesn't have to be so sedated for the Final Four next weekend.
Don't forget-tomorrow is the first annual Congenital Diaphragmatic Hernia Awareness Day! Missouri, Kansas, and Kansas City, MO have all signed official proclamations, along with 32 other states and 13 cities. Several more are pending. Mexico is the first country to sign a national proclamation and the U.S. national proclamation is in the works. This is amazing considering Breath of Hope just started this campaign for awareness 6 months ago! Thanks to the determination and hard work of parents, grandparents, friends, and family members affected by CDH, this awareness campaign has really caught fire, and more people are learning about CDH every day. Raising awareness will help to increase research that might find the cause of CDH and someday may lead to a cure or even better - prevention!! Wear your turquoise tomorrow to support this cause, and try to tell at least one person about CDH. It will make a difference! Don't forget to email me a picture of you wearing turquoise to show your support for Baby Sofia. Please send them to email@example.com and I'll post them to the blog. Here is a little preview of some of Sofia's pals getting ready for CDH Day...
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She seems very comfortable today and looks like she has good pain control. They seem to have found a good level for now with her morphine and versed drips, so they haven't changed them from yesterday. Her morphine is still at 140, and her versed is still at 110. She hasn't needed as many extra doses of pain medicine today.
Her incision is a lot less red, and her white count has gone down since yesterday with the antibiotics on board. She has a low grade temperature again this afternoon. It's still early, but her cultures so far have shown no growth of bacteria, so that's good news. We won't know for sure on those for another day probably.
Her chest and head are still very swollen. They are replacing the fluid volume that drains out of her chest tubes. She gets 1/2 cc of albumin (albumin is a large protein found in the blood) for every 1 cc of fluid that drains from her chest tubes. She's also getting 2-3 additional boluses of albumin per day to help draw some of the fluid that's causing her swelling back into her vascular system, so she can pee it off. This should help not only her swelling, but also her blood pressure and heartrate.
Yesterday afternoon they removed the dressing and drain from her ECMO cannula incision site. The incision is about an inch long on the right side of her neck, and it's already healing so well! I think you'll barely be able to see where it was once it is all healed. She already has 5 major battle wounds, so hopefully they will all heal as well as that one.
We actually ventured out of the hospital yesterday afternoon for a couple of hours to try to find Sofia some furniture, so she has a place to rest her cute little head when we take her home. We didn't find anything we liked yesterday, so we're still looking, but Daddy did pick out some little socks to keep her feet warm. And of course I had to make a little scrapbook of her first socks :-) . . .
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Her blood gases continued to look good all night until around 5:30 this morning, when her pH was a little acidotic, and her CO2 had risen from the 40's to mid 60's. Her heartrate got up to the 190's, and her blood pressure was in the 30's. To help raise her blood pressure, they increased her dopamine drip to 12. They did a chest xray and found that she had a large air leak on the left side, and her chest tube on that side needed to be repositioned as well. They air leak had caused her heart to shift back over to the right, compressing her good lung, which is what caused the change in her blood gases. They inserted a needle into her chest to withdraw a large amount of air and fluid and then adjusted her chest tube, and she quickly got better. Her gases all day have continued to be very good and stable. Because she lost quite a bit of fluid from her chest last night, they needed to replace that volume, so she is getting a unit of blood right now.
Her temperature was a little unstable overnight and today, and she had some green drainage on the dressing around her chest tube site on the right side. They changed the dressing, and her skin wasn't reddened at all around the area. The site itself didn't really seem to have any green drainage, so that was good. As the day went on, her heartrate remained elevated in the 180's, and her blood pressure was running a little lower in the upper 30's - lower 40's. Her white count was also elevating, so they sent some cultures to see if she might have an infection. It will be 24 hours before the culture results are back to know for sure, but they went ahead and started her on some antibiotics - gentamicin and vancomycin. They will repeat her labs in the morning, and hopefully she will start getting better after about 24 hours.
Sofia is just resting and healing and getting ready for the big Jayhawks game tonight. Rock Chalk!
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She did amazingly well during her surgery and continues to be stable this evening. She didn't need to receive any blood or blood products during her surgery. She received one unit of blood after surgery, mostly as a precaution, but her blood loss was minimal considering how invasive her surgery was. Her abdomen is pretty swollen after surgery and will likely be much more swollen over the next couple of days. After being removed from her chest, her herniated organs were placed outside of her body while the surgeons placed a large patch over the area where her diaphragm was missing. Her organs were then placed in her abdomen once the surgeons made sure the patch was secured. Because of how much those organs were handled, particularly her intestines, they will swell after surgery. This is normal and will resolve in a few days. We are expecting the next 24-48 hours to be pretty rocky and have a few setbacks, but she should pull through it just fine and really begin her healing process.
Because her defect was so large, she does have a patch. Her patch is an AlloDerm patch, which is made from donated human skin tissue. It provides a biological matrix for her own tissue to grow through. The original patch material eventually dissolves, leaving her new tissue behind. This type of patch will hopefully lessen the chance for reherniation later. However, reherniation is always a possibility, especially with the size of her defect.
Before the surgery, her heart and lungs were shifted significantly to the right side of her chest. Now that the herniated organs are in their proper place and there is room in the left side of her chest, her heart and lungs will slowly shift back into the proper position. The body doesn't like to have an empty space, so the space where the organs were in the chest is filled with air and fluid right now. For this reason, they placed a second chest tube on her left side to help remove a small amount of that air. They don't want to quickly or completely drain the fluid off that space, because it could cause the heart and lungs to shift drastically over too far to the left. By leaving that fluid in there, it allows a gradual shift that is less traumatic, and the fluid will slowly reabsorb into the body on its own.
Her incision is large, about 6 inches in length, and goes about 2/3 of the way across her abdomen. As her Daddy says, that's one big owie! Her skin is closed with sutures in the layers beneath the surface of the skin. These are called subcutaneous sutures and will dissolve. The part of the incision on the surface of the skin is closed with a type of clear gel called DuoDerm that's kind of like superglue.
We are so glad to have this big hurdle behind us, so Sofia can start to heal and get ready to come home with us. We still have a long road ahead, but this is one major step we have finally been able to get past. We pray for her continued strength and healing, that she is comfortable, and feels her Mommy & Daddy are here with her. It's so hard to see your little baby laying all by herself on an OR table in a big room with a big incision that looks so painful, and not be able to pick her up and hold her and make her feel better. Hopefully it won't be long until she is better, and we can finally hold her. Here are some pictures from her big day and her battle wound. Just a warning, if you have sensitive eyes, you may not want to look! Thank you, everyone, for your amazing prayers today. God has been with Sofia protecting her before she was even born, and she is truly a miracle baby.
Seriously, Sugarbear, a fauxhawk?
Getting ready for the big surgery
One of the Respiratory Therapists, Dot (Sofie's nurse), Dr. P (anesthesia), & Dr. H
Sofie's pretty little tummy before & after the surgery
The Big Owie! (Don't worry, it'll get better)
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The first annual CDH Awareness Day is Monday, March 31st. Be sure to wear your turquoise in support of all CDH babies, including little Sofia! If you're looking for official CDH Awareness Day gear, click here. If you would like to order CDH silicone bracelets, you can find them here. Or click on the pictures below. Also, if you wear turquoise on Monday, send me your photo at firstname.lastname@example.org and I'll put you on the blog next week!
Thank you so much to everyone for your support and prayers, it really lifts us up during these rough times. We are so lucky to have such a strong support system. Sofia even got an email from her friend, Garrett, who can't wait to meet her when she's all better. Garrett is my friend Melissa's sweet little boy, and he had his Mommy write a special email from him to Sofie. Here it is...
Dear Baby Sofie -
I love you and hope you get better so you can snuggle with your mommy. I told the Easter Bunny to bring you a new book and a whistle like mine. I like your pink bow, but I want you to have a blue bow like Cinderella. I'm going to make you a blue bow, and a card for your room. I want you to take the tube of your mouth because I can see your mouth. When you get better I want to see you. ( Exact dictation from a 4 year old )
She seems to be doing much better now, but we are very nervous we will miss her very narrow window of stability for her repair surgery. The most upsetting news this afternoon is that the surgeons will not have time to do her surgery today. We feel such a sense of urgency to get it done while she's doing ok, so this has been really upsetting. As of now, her surgery is scheduled for around noon tomorrow. Please pray that Sofia continues to hold steady throughout the rest of today and tonight while she is waiting for her surgery to be done tomorrow.
I think she is trying to tell everyone she is ready to get all fixed up today. So let's just hope she continues to behave and the Doctors agree. When we hear a more definite time for surgery we will let everyone know.
The plan changed a little this afternoon. She did so well with her challenge today, that they decided around 4:45 this afternoon to go ahead and try the clamp test. She did ok clamped for 2 hours, so they've decided that she will be stable enough to come off ECMO for her surgery! Her decannulation surgery is set for tomorrow. We are still unsure of the exact time, but she will be officially off ECMO sometime tomorrow. After the clamp test this afternoon, they unclamped her and turned her flow back up to maintain her through the night. They don't want to do the decannulation surgery during the night, so they will hold tight and wait until tomorrow when the full crew is here. This is really exciting, but at the same time very scary. We just hope she is truly stable enough to withstand everything off ECMO, because there's no going back once it's gone. On the other hand, surgery is much less risky off ECMO, so it's good that it looks like we're proceeding in that direction. They also repeated her echo this morning and her PPHN is better. Her pressure was 49, much better than the last echo on Friday which was 89-90!
If all continues to go as planned, her repair surgery will be sometime around noon on Wednesday. So hopefully Sofia will cooperate and stick to the plan this time!! It's going to be rocky for the next few days, so Sofia really needs some extra prayers to get through it. Please pray that Sofie continues to be stable off ECMO, through her surgery, and in the days afterward.
Sofia's Mommy & Daddy
I also want to thank my friends, Julia & Melissa, for helping to prepare so much for the blood drive, for coordinating with Menorah for me, and for being there tomorrow. You guys are such a huge help, there's no way I could have done this without you!!
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She has been sleeping well since we got here this morning, so she doesn't have her "Easter outfit" on yet. Never fear, there will be pictures later today!!
And as promised, here is Sofie's first movie! This was from yesterday when she was so alert and awake. She's so cute!
The plans for weaning off ECMO have changed again, as you might imagine. Every time we make a plan, little Miss Sofia decides to change it for us! The plan was to try to wean again tomorrow night and into Sunday morning, possibly removing her cannulas on Sunday and surgery on Monday or Tuesday. Now we will let her rest over the weekend. They'll reevaluate her on Sunday and possibly try to wean again Sunday or Monday if she is stable enough. If not, or if the wean isn't successful, we'll discuss going ahead with the repair surgery on ECMO.
Repairing on ECMO has many risks, but mainly bleeding is the biggest risk. Her blood has to be so thinned while on ECMO to prevent clots from forming that she's at a very high risk for hemorrhage during surgery, particularly for bleeding in the brain as well. Both of these risks are very scary, but if she's not stable enough to come off ECMO that will be our only option.
Please continue to pray that her PPHN resolves, so she can truly be stable enough to come off and stay off ECMO!!
This morning she only got 88 on her oxygen challenge test after performing like a rockstar yesterday and getting 383. Her chest xray this morning showed some more fluid collection in that right lung again, so they have adjusted her vent settings to try to help that. She also mistakenly received more IV fluids last night than she was supposed to. Her TPN ran in too quickly, so she is a bit more swollen today and getting some lasix to help her get rid of that extra fluid. Thankfully her blood sugar and electrolyte levels weren't affected by this. She really seems to have handled it pretty well.
Despite all that she is doing better today. Her O2 sats have been 96%-100% today and she has been awake looking around for us, stretching her legs, and looking pretty content to be awake snuggling her Sugarbear even though we tell her to go to sleep and rest. She is stubborn!! Wonder where she gets that from? We got some cute video today of her looking around at us that I'm sure is only amusing to us, but I will post it to the blog for everyone's enjoyment just in case. She is such a cutie!!! I can't wait to be able to hold her!
Sofia's new (old) room
Mommy gets to change Sofia's diaper for the first time (Tuesday night 3/18)
Daddy gets to put on Sofia's lipgloss (Tuesday night)
ECMO today. Everything was going pretty good, but she just wasn't able
to keep her CO2 levels down in a good range once they clamped her off.
The doctors said there were drugs they could have tried to help her
out, but they felt that since we were getting close to our time limit
for being clamped off that it was best to just turn it back on and
give her a few more days to rest.
They replaced her breathing tube with a larger one to help with her
with her air leak during the time they were trying to clamp her off.
So while she doesn't sound like a duck anymore Dr. H thought
this might have been a little more than she could handle during that
time and she just didn't have enough time to recover before they had
to make the decision.
So while we are disappointed it is better to give her some more time
than to take her off before she is good and ready. Because once we are
off there is no going back. I think the real reason she didn't come
off today is she wanted to stay nice and stable over the next couple
days so daddy could sneak off and catch a few minutes of the Jayhawks'
games without worrying about her too much.
We will make it next time.
So the plan is to clamp her off the ECMO in a little while and see how she responds to doing all the work on her own for a couple hours. If that goes well she will have the surgery to remove the canulas from her neck with the thought being to do her repair surgery on Friday.
The doctors say that since she has done so well without much additional help that we still have a lot of tools in the bag if she should need it. But let's just pray we don't need them. These next few days will be a little rocky, but when we know more Jennifer or myself will try to update.
The plan is to begin weaning her ECMO settings at 9:00 pm tonight. The process will take several hours. They hope to be down on a very low flow of ECMO by 6:00 tomorrow morning and then leave her on that setting for a couple of hours to see how well she tolerates it. If she does okay with that, they will clamp her ECMO cannulas for 3-4 hours. This is called "trialing off ECMO", and it's a preview of how she'll do when she is taken completely off ECMO. If she does well with the trial, they are scheduled to remove the ECMO cannulas sometime between 12:00 and 2:00 pm tomorrow. From that point, they want to give her 36 hours to stabilize herself before proceeding with the repair surgery. If all goes well, her surgery will be around noon on Friday. So that is the plan as of now. These next few days may be pretty rough for Sofia, so please pray extra hard for her !!
If she doesn't tolerate the wean tonight, they will turn her ECMO settings back up and let her rest a couple more days before trying to wean again. There is also a good possibility that because of her PPHN, she may need to go back on the high frequency ventilator tonight and receive INO therapy (inhaled nitric oxide to dilate the blood vessels in the lungs) again to help with better oxygen exchange. Dr. H is also starting her on a new blood pressure medication tonight called milrinone to help with the PPHN. Dr. H is a great doctor and she'll here will Sofia all night tonight during the weaning process. We are so thankful for that!!
Kenny and I are staying here at the hospital again tonight and probably for the next several nights, until Sofie gets through this part of her recovery. We tried to power nap this afternoon for the all-nighter tonight. I'm sure we'll have no problem staying awake!
The main factor in how she will tolerate coming off ECMO is her lung function. If her PPHN is resolving, there is little risk that she would rebound to the point she was at before going on ECMO. They will do an echocardiogram in the morning to check her progress on this.
If all looks well in the morning, the plan is to start weaning her off ECMO sometime tomorrow afternoon. They'll do this over a period of 12 hours or so and then trial her off the ECMO circuit by clamping the tubes for around 2 hours to see how she would tolerate being completely off. If that all goes well, they will remove the ECMO tubes (cannulas) on Wednesday. If she remains stable, her repair surgery could be done on Thursday or Friday of this week.
The doctors say she may be very critical coming off ECMO and then again for the first 24-48 hours after surgery. After that point, everything will hopefully be much smoother for her and she'll be on the road to recovery!!! She has been amazingly strong all along, so we have faith that she'll do really well with all of this. She needs lots of prayers this week to get her through the rough patches that await!
Kenny and I finally went home for the first time on Saturday night since Sofia was born. It was so hard to leave her here!! But we knew these last few days would be her most stable for a while, so we needed to rest while we could. Tonight will be our last night at home for a while and then we'll be living at the hospital for a few days again. It's so nice that there are sleep rooms and a shower for us downstairs in the Ronald McDonald Family Room. We stayed there all last week and it was great knowing she was just a few steps away and we could visit her during the night. Everyone has been so great here to help us with anything we need. We are also really happy that Dr. H will be on all night tomorrow night, during Sofia's weaning process to watch over her. She has been taking care of Sofia since her arrival here at Children's and she is fantastic!! Sofia is receiving excellent care here from all of her doctors, nurses, and RT's. Thank you to all of them!
To our parents who have kept watch in the sometimes crazy waiting room and to Kristi for all the things you have done to keep Jennifer sane, we appreciate it.
I would also like to thank everyone at my job for everything they have done to help me out personally. I knew before this that I worked at a pretty great place, but this has really solidified it. The gifts you have given and all that you are doing to try and raise awareness have been amazing. But to have people giving up their personal vacation time to me so that I will be able to spend more time focusing on Sofie may be may be the best gift I could have received. I know you are probably expecting me to say this, but you have done too much. If you are trying to make a lifer out of me you may have sealed the deal.
To our friends Amandrew, we will never be able to repay you for all that you have done.
I wish I could mention everyone by name but I don't want to leave anyone out. Just know that we are keeping a list and when she is up to it Sofie will be hand delivering thank you notes.
Continue to keep us in you prayers and Thank You.
She got to have a few visitors over the weekend, while she is a little more stable. We'd love for more people to be able to come see her, but she is still too critical for much activity and her risk for infection will continue to be an issue for many months to a year. The risk for infection is why we won't be able to take her out in public places or to daycare for a very long time, and she can't be exposed to other children during that time either. But Sofie thanks you all for your wonderful prayers and good wishes!!!! Please continue to pray for Sofie to rest and regain her strength to fight her next fight. They plan to try to wean her off ECMO early this week and that will be a very critical time for her. After that, the next major hurdle will be her repair surgery, possibly at the end of this week or beginning of next week. She is such a strong baby, and your prayers have helped to carry her through some very rough times!
The nurses also say they really think the Narcan drip (from the study she is pioneering) is really helping her. Her morphine and versed dosages have not needed to be increased since she arrived. Her dosages are 40 of morphine and 30 of versed. Some babies that are on narcotics for a very long time get up to dosages of 300 of morphine and 200 of versed. So she is on a very low level and still scoring 0-1 on her pain levels. She is a little more active and sometimes wakes up, but she doesn't seem to be in any pain and she tolerates the increased activity very well with no change in vital signs. They are hopeful when she finally comes off of the narcotics, her withdrawal symptoms may not be as severe since she had the Narcan drip. We hope so too!!
Her sodium levels decreased after they changed her TPN yesterday and she started having lots more wet diapers, which is great. She is a lot less swollen today and her urine output is very good.
Yesterday was the first time she woke up and opened her eyes since right after she was born. I'm so glad we were there at her side to see it! We took a few pictures too (for a child that sure doesn't do much, we have 500 pictures of her already). She also was sporting her CDH Awareness Bow yesterday, courtesy of Grandma Linda.
My first hairdo
Here's a quick picture from today. I'm working on putting together some more slideshows. Hope to have them up tomorrow.
On Tuesday or Wednesday of this week, they put a catheter in because she hadn't had a wet diaper for almost 8 hours. Once they put it in, she emptied tons of urine, so it was just the morphine she's on that was making her retain urine. They took her catheter out yesterday to see if she would go again on her own. The last couple of days her urine output has decreased a little, but is still adequate. They think the reason for this is she might have too much sodium in her TPN, so they are reducing that to see if she'll have more wet diapers to get rid of some of her fluid. This may help some with her swelling. They also check often to see how thin her blood is, since she has to be on a lot of heparin with the ECMO machine to keep the blood from clotting while it's running through the circuit and back to her. Her levels were all good last night and she didn't need any blood products at all last night.
This morning while we were waiting for the team to make rounds, her nurse helped us get footprints and handprints for her baby book. See how cute!!!
We started out yesterday on such a high note. We thought we'd be through with the repair surgery by now and on the road to recovery. They decided to move her to the OR suite which is attached to her room at 1:00 pm yesterday to see how she tolerated it. The move took 30 minutes and 9 people. I think Kenny and I held our breath the entire time. It was very stressful to watch!! She tolerated the move very well and continued to be stable. So around 3:00, they scheduled her surgery to be today starting between 10:00am-12:00pm.
That was the plan until about 5:30, when her O2 sats suddenly dropped to the 80's. Her heartrate started climbing and she began to be more and more unstable. At 6:30 her sats were hanging at 67% and the doctors started discussing ECMO with us. She had quite a team of people assembled to take care of her. Her doctors and nurses have been fantastic here! They are taking such good care of her, and we are always reassured that she's in good hands. Finally at 10:00 pm, the decision was made to place her on ECMO. In the hour before they made the decision to do ECMO, she was trying so hard to fight. She raised her sats up to 77% very slowly, with her Daddy cheering her on. This wasn't the scenario we were hoping for, but it was clear that she was getting tired and really struggling. Being on ECMO will give her a chance to rest a little and regain her strength so she'll be stronger for surgery.
They started her ECMO procedure to place the cannulas around 10:30 pm and finished around midnight. Then they slowly changed all of her settings over to accomodate her being on ECMO. They took her off the high frequency oscillator vent and placed her on a conventional vent. They will not need to oxygenate her with the vent as much since she will be oxygenated by the ECMO circuit. This will allow her lungs and heart to rest.
We finally got back in to see her around 1:00 am. She tolerated the procedure very well and immediately brought her O2 sats and blood gases back up to a normal range. She is so strong!!
Today was a much more stable and restful day for everyone. We can see that she is resting easier and not struggling as much, so that's good. She also doesn't have to be quite as sedated now, so once in a while she'll move her toes and feet and move her little hands. She is pretty swollen from all the fluids and blood products she has gotten so she can't open her eyes because her eyelids are swollen. Since the ECMO circuit keeps her stable, she isn't stressed as much by lights or noise or being touched, so we have been able to touch her a little bit today and talk to her. She even got her first bath early this morning! Her hair is strawberry blond and it's wild!!
I'm sure we'll sleep better tonight too, and we may even go home a little tomorrow if we can tear ourselves away from our sweet baby!
This morning during rounds the team was very encouraged by how much she had improved and feel today or tomorrow may be a good time to do her surgery while she remains in this stable window. We are waiting for the surgeons to come by and see her now and there is talk that they may actually do it today. The goal is to get it done while she is as stable as possible to avoid having to go on ECMO before the surgery, because doing the surgery on ECMO is much more risky. There is still a chance even if she did have her surgery today that she might need ECMO afterward.
After her 9:00am ABG her levels were so good they weaned her vent again down to 32. Yeah Sofie! You can do it! Her 11:00 ABG was also rock solid so they did another echo to check her pulmonary pressures more accurately. This is kind of the final criteria that needs to be good for surgery to happen. Will update again when we hear anything about surgery. Please continue to pray for Sofie to stay strong and stable!!
Around midafternoon, she had another spell like she did in the morning. They gave another NS fluid bolus and also gave 3 of hydrocortisone to try and help her blood pressure, which has settled in the 50's, making her PPHN a little worse overall. Through the afternoon her b/p's were labile and then around 4:45 pm she dropped her sats to the upper 80's and had another spell. Her ABG was not as good and her PPHN was worsening. So she probably won't be having her surgery Thursday, which is okay with us because we want her to be more stable when she goes in. After that last spell, they increased her dopamine and dobutamine and jumped way up on her vent settings from 31 to 36. Since she doesn't have much further to go on the vent or with her blood pressure medicines and her PPHN is getting worse, they are now considering putting her on ECMO. So after starting the day at the highest of good news, we were ending with some of the worst news.
We went down to rest in our sleep room and pray that Sofie stabilizes and doesn't need ECMO. It's now around 3:15am and Kenny just went to check on her and said since her last spell around 5:00 pm she has been pretty stable with sats 95-96%, b/p steady in the 50's and hr steady in the 120's. No further spells, her ABG's have been good, and her vent settings were weaned again down to 34 from 36. Her 1:00am chest xray showed her pneumothorax was slightly worse and her urine output is down a little. They are okay with her urine being less because she had been putting out tons, which means her kidneys are being perfused and working well. So that is where we stand heading into Thursday. I pray that we can get back on the right track and avoid ECMO and that her PPHN improves. Please pray extra hard for Sofie today, she really needs it!
I want to start by thanking everybody for their thoughts and prayers. Whatever you are doing keep it up because our little girl is as good as we can hope for at this point. She is such a strong little girl.
Mom got released late yesterday morning from the hospital so she was able to spend a lot of time with Sofie yesterday. She probably overdid it because she was in a lot of pain last night. Thankfully they have Ronald McDonald Family Rooms here at the hospital so she was able to lay down last night and get some much needed rest.
Well I better get to the star of the show. While I don't think they could find room for another wire or tube on her little body and she has enough drugs going in her to make everybody on Celebrity Rehab very jealous, she is doing really good. The main problem right now is there is air leaking from her right lung that they are trying to get under control. They put a chest tube in not too long after she got here to help relieve the pressure. After several rounds of Xrays throughout the day they thought it wasn't in the best location to be getting everything so they put in another tube last night and her blood pressure numbers are the best they have been since we got here. The doctors have even said that if continues to progress at this rate that they're optimistic that we will be able to make to surgery without having to go on ECMO. Which may be the best news yet.
I think I should start leaving her alone more often because everytime I went in to see her last night they were lowering her settings on the ventilator. The Doctors told us we are on the low end of the range of settings, but it's still good to see everytime they go even lower.
The surgens were in to check on her this morning, which is good becuase the doctors told me when we got here we wouldn't see them too much untill her vitals got into a range that is safer for surgery. They told me we aren't quite there but we are getting closer.
Some of her doctors have begun a study that is trying to help babies that have to take a lot a pain killers. With babies that are on pain killers for a long period of time they begin to develop a tolerance which means the drugs levels have to continue to increase. This also means they have a harder time with withdrawls when they start to come off the drugs. So her doctors want to try a drug that has been used on adults and has been effective but hasn't been studied on babies yet to try and limit the the need to increase her pain medication levels. Our little girl is the study's first participant. So the doctors say if this works she will be legendary to a lot of babies in the future.
Well while it seems like I have been writing forever I sure I am leaving out so much. I need to go down and get Mom so I will sign off for now. Keep those prayers coming. More updates later. Hopfully from Jennifer who is better at this stuff.
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Jennifer is doing well, as is Kenny. The NICU is preparing Sofia for transport to Children's Mercy Hospital in Kansas City, MO. Early reports of Sofia's condition sound positive. Jennifer will be providing updates regarding Sofia's progress in the days to come.
On behalf of Kenny's parents (Grandma Cheryl and Grandpa Kenny) and Jennifer's parents (Grandma Linda and Grandpa Steve), we want to thank all you that have helped Jennifer and Kenny in so many ways. A special thank you for all of the prayers for Sofia. Please continue to pray for miracles in the days and weeks to come.
Another victory in the CDH Awareness campaign came this weekend. Initially Kansas denied the proclamation for CDH Awareness Day, because the Governor's office determined that it was not of "local or regional interest." After 2 letters to Governor Sebelius, my parents took another route and contacted Senator Schmidt. The work paid off and Governor Sebelius signed the proclamation declaring March CDH Awareness Month! See the official proclamation below!