Monday May 21, 2012

Kirby was taken off the ventilator on Saturday and remained off for 29 hours before she had to be put back on last night. She appeared to be struggling to maintain and her body finally had enough. Once they re-incubated her she continued to have some difficulty overnight maintaining her blood gases including oxygen levels, etc. they re-introduced her to some of the previous meds for blood pressure, pain, and blood thinner as she was on before. Her blood gases have improved some this morning. The drs are planning to continue to monitor her and wheen some of the ventilator support and meds as she continues to level out. Please continue to pray for her strength and restoration of all her organs.

Big week!

Kirby has had a great week. She has continued to improve this week and to quote the dr.... "we are amazed at how well she has done this week". We are not at all amazed because we serve a mighty God. I get the impression the Drs. really didn't have much hope for our sweet baby girl. God has been so good in letting us see the miracles that have taken place each day. I am not sure that people really understand the miracle that Kirby is. She has fought through many hardships over the last few weeks that without God's healing power....she may not have made it through. So, yesterday Kirby was taken off the ventilator after 5 weeks of being on it. They did CPAP trials for several days and decided she was ready. She had a great day with the exception of a reaction to the steroid that they gave her which caused a rash all over her back. She was very aggitated with this and more than likely aggitated with the discomfort in her throat from the irritation of the ventilator tube for 5 weeks. They were pleased with everything until last night and her evening blood draw that showed that her blood gases were a little off. They did not want to re-intubate but rather to let her try to work through it. She has done okay so far and they are just continuing to keep a close watch on it. She gets a little aggitated when she wakes up at times. I just want to pick her up and hold her......but I can't just yet....hopefully this week though. The Respiratory Therapists have been doing some treatments to help with her lungs and will continue to do so throughout the day. Continue to believe for strength and healing of her lungs. It is so good to see her sweet face without all the white tape. Here are a few pics from the last week or so. Enjoy!

Don't I look comfy!!!

No more white tape on my face. First picture without the ventilator!

Improvements!

Again.....I am sorry for the delay on the posts. The days seem to get away from us so quickly. It seems that we would have lots of time to sit and make calls, respond to texts and facebook messages, update the blog, write thank you notes, etc. but we surprisingly don't stop. We are constantly sitting back with Kirby in the ICU, talking to doctors, meeting and talking with new families, eating, running errands, etc., etc.  The days seem to fly by. Since the last update, Kirby has begun to make progress. After our setbacks last week we have made progress. After talking with the surgeon last weekend, he decided the best route for Kirby was not surgery for the narrowing in the pulmonary artery. He did not feel like it was significant enough to have caused our setbacks. He determined that we would let her rest for a few days and then begin to very slowly make ventilator changes and treat her lungs with some medications for the excess fluids in her lungs along with frequent suctioning and turning. Her lungs were not able to properly oxygenate her blood due to the fluids and collapsing of the lungs. They also drew off lots of fluid from around her lungs giving them more room to expand. During this time we also began NG feeds. After some issues with fluid around her lungs and in the chest cavity, they determined that she has Chylothorax (in my terms it is an issue where the fats from formula or breast milk leak into the chest cavity or around the lungs due to damage during surgery), which is a very common with children who have had heart surgery. So... they began feeding her a special perscription formula that is essentially fat free. This is not necessarily permanent and can heal with a little time. Over this week they have slowly wheened the ventilator and tweeked her meds. Kirby has shown us that big changes are difficult for her so they are taking it very slowly and this seems to be working well. Today has been a big day for her. They took her off her blood pressure meds, took her off blood thinner and substituted Aspirin (which she will take long term...probably for most of her life), took her off Morphine, introduced meds to wheen the Morphine and Versed (sedation medicine), increased her feeds to full feeds (she gets 18 cc's an hour over 4 hours which is equivalent to about 2 ounces in 4 hours), and wheened down ventilator support. With all that said, her blood gases have continued to be great! Thank you Lord! Continue to pray for her to tolerate the ventilator changes, to get stronger with her feeding and overall healing of her body. Oh yeah....I was able to change my first diaper on Mother's Day...make that 2 diapers in 1 hour...and Kirby made sure she did it right....2 big poopy diapers. Oh the things to celebrate!
AND....Kirby turned 1 month old on the 10th!

Update

It has been a week since I updated...sorry for the delay. It has been a week of ups and downs, good days, steady days and some setbacks. Kirby seems to keep us on our toes. After they closed her chest we had a few unsteady days getting her vitals and stats to stay stabilized. There's so much I could go into with that but we would be here all day. They check blood pressure, blood gases, oxygen levels, etc. etc. we finally had several good days with great decreases in meds and decreases in the ventilator. We felt like we were finally over the hump until yesterday morning. Her blood gases seemed to be significantly unstable and they had to increase blood pressure meds and increases ventilator support and add a machine that gives her nitrogen to relax her lungs. So...we took several steps back. They also decided to do a CT scan to determine if there was a problem with the shunt that was placed during surgery or to see if there were any other problems. They found some narrowing of the pulmonary artery where the shunt was placed but not significant narrowing. They also determined that there was some fluid around the lungs. They let her settle down and rest overnight as they determined what to do next. This morning they decided to wheen some ventilator support and the nitrogen machine and this has been successful so far. They also went in to place a chest tube to drain the fluids around the lungs. They were able to manually drain some fluid as they went in. So at this point, we will wait to see if that helps with her blood gases. Continue to pray for complete healing and strength for us and Kirby. God is good and continues to be faithful to his promises.

Monday update

What a big day we have had! Kirby's chest was closed today! Praise the Lord. She has had an open chest since her surgery 2 weeks ago. This is longer than the norm but with her being put on the ECMO machine and her swelling, it has taken longer. Josh and I are getting a good lesson in patience and trusting God completely. Kirby has done great so far and we know she will continue to do so. She is a fighter for sure.....it took 2 doses of the paralytic medicine to knock her out for surgery....after one dose she just kept looking around like it was nothing. Josh said she gets it from me but I am not too sure. Ha! Thank you for your continued thoughts and prayers. We miss everyone back home so much but know we are now one huge step closer to being home. We have a long way to go but our prayers continue to be for a speedy recovery that will amaze the doctors. Our next steps will be getting off the ventilator, umbilical lines out and feeding...no she still has had no food :(.....and of course getting to hold our baby girl (we have only held her twice since birth). The word is that feeding can be difficult with these babies since they have not had to use there suck/swallow reflex yet. We pray this goes smoothly with no complications. They will begin with very small amounts through her NG tube and then progress to "real" feeding. We love you all and thank you for your thoughts and prayers. We definitely feel them!

Sunday April 29, 2012

Kirby has had several good days and a good night last night. They were able to take the ventilator rate down and the oxygen level down more last night. Praise God. They are doing another partial close as we speak. The next step will be to completely close her chest. Thank you Lord for answered prayers and progress.

Saturday April 28, 2012

Kirby has had a good week since the last update. They decided to partially close her chest yesterday to see how she responded. Her vitals remained stable and she had a good night. She is definitely proving to be a fighter! They are thinking they may try to close her chest completely this weekend or early this coming week. We have a long way to go but we are making progress. Next steps: ventilator tube out, chest tube out, umbilical lines out, learn to feed/eat, etc. Thanks for your continued thoughts and prayers.