It has officially been 2 weeks since Madi had her trach placed. She is doing really well. Right after her surgery she was placed on paralytics and sedation and was able to come off the paralytic last week. They have slowly been weaning her sedation as she tolerates it and that is actually the ONLY reason we are still in the ICU. This is the first time in Madi’s life that she hasn’t been so critical that she needed constant intensive care. If she continues to tolerate the weaning schedule she should be off of all her drips by sometime next week. She came off of her morphine yesterday so she has 2 drips left to wean. She is waking up more, and loves looking at herself in a mirror. She has had her trach changed for a new one twice now and will have another change on Tuesday. Continue reading »

Hold on… that is exactly what we have been doing for the last 5 months, even longer since we knew Madi might have some problems we may be presented with when she was born. I remember feeling so devastated after they said there may be something wrong with our baby girl. All the joy we had for the pregnancy seemed to go out the window, replaced by fear. Continue reading »

These last few weeks have been some of the most stressful weeks of our lives. Our last update we posted, Madi had self extubated and was doing fantastic. That continued on until last Monday, and she didn’t have the best day, followed by Tuesday which was not a good day either. She unfortunately had to be re-intubated on Wednesday morning.  Continue reading »

Well, it has been a while since we posted a detailed update… so here it goes! Hold on, because these last few weeks have been CrAzY.

On September 30^th, Madi was extubated for her first time since her repair surgery on September 11^th. She made it until October 3^rd and had to be re-intubated. We strongly feel that when she was extubated this time that she was having withdrawals from some of her medication being weaned and it was all just too much for her. If she was awake she was crying, and if she was crying she was dropping her oxygen and heart rate, so it was a very long few days and we were happy to see her get some rest from having to struggle so hard.

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Well, our sweet girl is officially 3 months old on Friday. We haven’t posted a detailed update since we found out Madi’s repair was healing and everything looked well, so here it goes!

Madi was able to come off ECMO on Monday, so that is our BIG praise for the week. ECMO was definitely more intense than we expected. Everyday Madi required lots of blood products to keep her levels good, along with lots of lab work and different types of monitoring. Towards the end of the week she seemed to be bleeding… A LOT. They have to give a continuous flow of heparin (blood thinner) so the machine with the blood in it does not clot! There were times where blood was spraying from her nose and mouth, and she also had blood draining out from her drainage tubes in her neck. She did not resemble the Madi that we have seen everyday or post pictures of so it was a very emotional and nerve racking week and we are so happy to be done with that machine. It did serve it’s purpose and help insure that her repair had time to heal, she will be going back to the OR on Tuesday to have another look at her trachea and esophagus. Although it was a blessing to have the ability to use ECMO and allow her repair time to heal, it didn’t come without complication. This week we heard some pretty scary words “Brain injury” On Tuesday the nurses noticed Madi was having some movement that was concerning them for seizure activity, so she was hooked up to an EEG monitor which monitors her brain activity. They did detect some seizures, so we went for an MRI on Thursday. Friday we found out that she does have a brain injury, that is most likely from the ECMO cannulas. While this was definitely not the news we wanted to hear and were devastated to find this all out, we must praise the Lord that it is not worse. According to the neurologist the tissue in her brain is damaged, but not dead, they actually consider this to be a stroke. The tissue can over time die and then the damage would be permanent. They have started her on a medication and that has stopped the seizure activity for now, but they will continue to monitor it. While we did not want her to have yet another issue to manage, the worst thing that she may lose from this damage is her left peripheral vision. Not ideal, of course, but we can deal with that. Many of the staff have been reassuring as well that babies are resilient and their brains can find ways to compensate for things like this, or ways to work around it. We know even more than her brain being resilient, our God is mighty enough to do whatever he wants with the situation, so we know she may not have any deficit from this at all and that is what we pray! Other than this little set back she has been doing really well this week. They are working towards having her ready to take her breathing tube out, as well as weaning down her medicines she is on. Those would be our two biggest prayer concerns! Babies become “addicted” to these pain medications very easily so she has to be weaned slowly and will go home on some medications that will be weaned over months to come. So we pray she does not have any severe withdrawal symptoms and she can come off of these medicines quickly. Secondly, we pray that her airway is stable enough and she can tolerate being without the breathing tube. She has had the ventilator breathing for her for almost her whole life so she will have to start doing all the work! Please pray specifically for these two areas. We know we will still be here for quite some time until she is able to transition to going home, but each little step gets us closer to that goal! Looking back over these 3 months, sometimes I wonder how we have even made it to this point. It makes me think of that poem “footprints” where when there is only one set of footprints the Lord was carrying you through that trial. That has to be where we have been these last few months, otherwise, we wouldn’t even be able to get out of bed in the morning. God has been so good to us through it all. Sometimes when I question, what is the purpose for all this, that day I will get a message just telling us how God has used this situation to work in someone’s life. I know my faith has increased by leaps and bounds and I have never relied on the Lord more than I do now. I pray that the Lord has used our situation to work in some of your lives as well. No doubt God must have a special plan for Madi, and is already using her to touch other people. I know the amount of people calling unto the Lord on her behalf is extraordinary. We thank you all so much for your support, love and mostly your prayers. We will post some  3 month pictures under the gallery section for you to enjoy of our little sweetie! With lots of prayers and God’s touch, maybe next months pictures will be from home or a lot closer to it!

Madi had a very exhausting day.  We started the morning with the Dr’s trying to take her off of ECMO and while she oxygenated well she couldn’t expel her co2 Continue reading »

Madi has a healing trachea! Her bronchoscopy revealed that her repair is healing, and still in tact. There is a lot of blood and mucus built up because her lungs have not been ventilated since surgery. So today the surgeon suctioned out her mouth, throat, and down her trachea into her right lung. She cleaned it out and we will start ventilating her right lung and try and get it back functioning. Most likely on Thursday we will go back to the OR and she will do the same thing for her left lung. After that we will recuperate her left lung and hopefully she will be off the ecmo by this weekend. We could not be more excited and thankful to the Lord that she is healing! We were the only ones in the waiting room tonight and were listening to “God’s been good” and that He has. Even when we feel like there is no way up and no bright side there is and He knows what he is doing. Please continue to pray for Madi, she is unfortunately still on the ecmo for a few more days. Prayerfully she will keep her numbers high and not need so much blood or interventions. If all goes well we are on the goal to be off ecmo by this weekend. She will still have a very long recovery and we will need her to come off the ventilator and breath on her own eventually. She is also on a lot of sedation medications that will have to weaned down so she doesn’t have withdrawals. Please, please keep praying for her. This is a wonderful bit of news we got today and could not be more ecstatic! Thank you all so much for your prayers!

Doesn’t it always seem like it is the small things we get caught up on in life? How often have you heard the phrase “don’t sweat the small stuff.” Well since Thursday I have probably drove the nurses crazy because I have definitely been sweating the small stuff. Let’s start with Friday… Friday was not too bad, probably better than I expected. Madi seemed pretty stable. She is very swollen from all the extra fluid she has on board. Continue reading »

Well for weeks we have anticipated, with excitement and dread, September 11, 2014. We definitely wanted Madi’s reconstruction to be completed so we could be in “recovery mode” and hopefully work towards going home. On the other hand, knowing what all she would have to go through definitely made us dread this date. Wednesday, we received word from her surgeon that we would be able to hold Madi before her surgery. Of course we were thrilled and she handled it awesome, It had been over a month since either of us were able to have her in our arms. We spent as much time with her on Wednesday that we could in preparation for yesterday. We got to the hospital, yesterday at 6:15am, and were welcomed by a wide awake, beautiful little girl. We spent time just enjoying her being so bright eyed until the Anesthesia team Continue reading »