Things have been going well. Madi has been laying out relaxing as best she can. She is totally off her IV meds which is great. They have also taken her off both her motility medicines. No big changes for now. The doctors will be having a planning meeting on the 29th to talk about Madi’s care and upcoming surgery. Please pray that God will give them wisdom on the right method to use and how to best take care of her. Keep praying for our sweet girl!
Tag Archives: madi
Madi Update – 8/15
15 ThoughtsToday has been good, actually this whole week has been good. Madi has been tolerating her feeds well and peeing and pooping đ which we are excited about! Good news is they are weening down her IV drips and she will only be on scheduled doses of medicine (that’s two less medicines) given through her J-tube. They have also taken her off of one of her motility medicines (another medicine gone) and if she does well without them they will ween the other one next week. All of this is in preparation for her “big” surgery which is still slated for September 11.
The most exciting thing – Madi smiled at her mom for the first time today! Â What a blessing!
Madi Update – 8 / 13
Leave a commentMadi has continued to have a great couple of days.  She has been tolerating her feeds well and they have now added protein to her feeds to help her grow stronger and heal even quicker. No real changes in her care for now they want her to heal and grow. Keep praying for her. I attached below what I believe to be the best photo taken yet… đ You can also click on the photo gallery link at the top as I will add pictures from time to time.
Madi Update
Leave a commentMadi has had a great couple of days and nights. We are so thankful she has been able to rest and feed. They have been fortifying her feeds with additional calories to help her grow bigger. She has been pooping and peeing good which is a wonderful blessing. The big news is we have set a tentative date for the repair surgery and it looks like it will be September 11. It’s this date for many reasons. Pray that nothing happens that would change this date. (Things with Madi). Also today please pray for the Williams family. They had to make the decision last night to stop the machines and their 2 month old “Colin” went to be with Jesus. Megan and I have cried for many families up here and we pray that God will allow us to be an encouragement to them. You all pray for them too. We love you all.
Madi Update – 8/10
Leave a commentToday has been a good day. We are so thankful for the good days. Madi seems to be pooping on her own which is great. Please continue to pray for Madi but when you do remember the other families that are here with us. We met a precious family two weeks ago whose son had been in the NICU for 8 months. “Jud” was his name. We found out today that Jud passed away unexpectedly last Sunday. Another family said goodbye to their little boy “Cooper” that was just 4 weeks old and had a condition (I Don’t know what it was) but that same family lost their 3 year old just 4 months ago to the same condition. Mine and Megan’s hearts go out to them. We hurt for them and for what will be their new reality. But at the same time we are thankful for a precious Savior whose love is even more real in the incredibly difficult times. Pray for these families tonight as you pray for our sweet Madi. God is good even in the midnight hour. Love y’all.
Madi Update – 8/9
Leave a commentShe has continued to have a good couple of days. No changes really. Feeds are still going good and she has started pooping again. đ They are going to add calories to her breast milk to help give her more nutrition and help fatten her up. Which is good.
Madi Update – 8/7
Leave a commentMadi Update – Madi has had an uneventful day. Although they did take her to the OR to replace her small POPE tube with a medium POPE tube. But everything went well and it only took about 15 minutes. We are thankful for the uneventful days.
Our appointment with the surgeons
2 ThoughtsWell, we had a week full of appointments this week! Starting Tuesday morning with our Fetal MRI; It was a lot different than I expected and I was definitely glad when it was over! They said they had gotten the shots they needed, although I had to stay a little extra because she started to move around and it took them a while to get the last shot. We had went into the appointment on Tuesday expecting to know some results before we left that day, and then we found out it would be Wednesday before we would know the results. Wednesday we had our first appointment at 11am which was our bpp ultrasound that we have weekly. Madi got all of her points in about 5 minutes, she was moving all around (like always) and did her breathing motions. She even let us see her face and was opening and closing her mouth, practicing talking Iâm sure. They checked my fluid level and it was at 30cm so it is considered moderate polyhydramnios. I am just supposed to take it easy and try and prevent pre-term labor, but I havenât shown any signs of that, so Praise the Lord! We then had our appointment with the DR, which went well too!
After that it was our last appointment with the pediatric surgeon. Thankfully we werenât too nervous going in to it! I had prayed that the Lord would give me strength for whatever answer we got. Our meeting went well! Unfortunately though, the MRI was âinconclusive.â It was somewhat disappointing because the MRI is supposed to be the most accurate way to confirm diagnosis. What they look for is the âpouch signâ that would be where her esophagus ends and doesnât connect to her stomach. However, the report stated that they saw some dilation in some shots, but could have possibly seen the whole esophagus in other shots. Very confusing! In light of those results though, we are choosing to see this as a blessing. While we had prayed that we would get the answer our heartâs desired, that she does not have this condition, we are going to Praise the Lord that we also didnât get the 100% confirmation that she does have it. If anything that just gives us more room to have faith and trust the Lord to heal her before she is born! Of course our appointments carried on with the worst case scenario in mind and we have everything semi planned out for her arrival. They really canât make too many decisions until she is born and they do some tests to evaluate how severe her case is.
We want to thank all of you who have kept us in your prayers, we can definitely feel them, and are so thankful that we have you all to help us through this. Through everything though the Lord has continued to be faithful to His promises and has not left our sides! He has shown us His goodness in ways we couldnât have imagined. We have been able to openly talk about the Lord and express to some of our medical team the faith we have that he will work a miracle. If he chooses not to work the miracle in the way we see fit, we will praise Him still the same, because we are so undeserving of the blessings he gives us daily.
Like the Bible says in Jeremiah 1:5, the Lord knew us before he formed us in the womb, and no doubt He has a very special plan for Madi. We canât wait to see how the Lord will use this situation and how He will get the glory for everything that happens!