Mackenzie Jane- Update 3

Mackenzie has been quite the busy girl lately! We've had 4 different appointments with 4 different doctors/specialists in the last 3 weeks. Our first appointment was with the Neonatologist at the Manning clinic at UMMC. Her doctor was very pleased with her progress. He saw no signs of problems right now which was great news, however he was very clear in our discussion, that it is still very early in her recovery, so he is cautiously optimistic about her long term prognosis. At the same appointment, we also met with a dietitian to go over MJ's dietary needs and recommendations for her feeding schedule. Overall she was very happy with Mackenzie's weight gain and daily intake, we did however switch her to a sensitive formula to make it easier to digest and hopefully reduce her spitting.

Our next appointment was the intake meeting and evaluation meeting with the First Steps early intervention program in Meridian. Both an occupational and physical therapist assessed her progress and also were pretty happy with her progress. The only test she didn't ace was holding her head for a minute when on her belly, which they said, no two month old passes but its part of the test. So going forward, we will have a monthly check-up at the house with the therapist to keep monitoring her development. The speech therapist will also be coming to the house this week to evaluate her and see if she needs any help right now.

This week MJ had her two month check-up with our Pediatrician, she is 22.75 in tall and 11lbs 9 ounces. She is right around the 50th percentile for all of her statistics. She got her first full round of vaccinations and was not pleased. Other than that, she got yet another fantastic report from the doc who again was very pleased with her.

Our last appointment was Wednesday back at Batson Children's at UMMC to see her Pediatric Neurologist. He did a full exam and again was pleased with her progress. No signs of any seizures since leaving the NICU and no favoring to either side of her body, no unusual or excessive body tone or weakening. Again, he is cautiously optimistic about our little girls future. We also got the good news that the EEG that was completed the day we got discharged came back normal, which was great because her initial one on her first day after the cooling treatment was abnormal. So for the time being Mackenzie will continue to take her anti seizure meds and as she grows, she will auto ween as her weight increases. In November, we will go back to have another MRI done to check her brain injury and verify that her injury locations haven't grown, and hopefully have shrunk. As long as things look good there, then we can hopefully stop the anti-seizure meds.

We will also go back to UMMC in November to see the Pediatric Cardiologist to make sure that the small holes in her heart closed. They weren't really worried about it, all babies have them at birth. But given her medical history they want to double check all of her development to ensure that they won't become a problem down the road. We will make a third trip back to Batson just before the holidays to see the Neonatologist for our next follow up.

So overall, the best news we could ask for given our circumstances. We are far from the end of this journey but things continue to head in the right direction. Thank you all for your continued thoughts and prayers for our little girl. It means more than you know!

The Adventures of Mackenzie Jane - Update 2

Sorry for the delay in posting this update, we have had our hands full with our little bundle of energy.

Tuesday morning, the docs pulled MJ off of oxygen again to see how she would do. They told us at the beginning that she needed to handle 5-7 straight days off of any O2 before they would let her go home. Tuesday went great, no drops in her O2 level and labs improving.

The doctors started Mackenzie on a small amount of formula on Wednesday afternoon to start weening her off of the feeding tube. Normally the docs said that they move very slowly in the transition to bottles, but with Mackenzie they wanted to move faster if she was able to digest it. Also, day 2 off the oxygen and no problems.

She did fantastic, no real spit up problems and no issues digesting the food. She did so well that they pulled her feeding tube completely and just gave her some fluids in the IV along with the bottles. They doubled her intake every day working towards a full 2 oz every three hours as the goal for her weight. By Saturday morning they had her up to the full bottles for the weekend. They also pulled her IV Friday afternoon.

All of her labs continued to come back normal except her newborn screen which tests for a variety of rare conditions. That was expected as a result of the meds that she was receiving for the first week or so of life. She continued to rock breathing room air, so the docs told us to expect to come home Monday afternoon pending another EEG and one more lab check.

All went well on Monday and we got to bring our little girl home Monday afternoon. Since we have been home, she has been eating like a champ, we are up to 3.5 ounces at every bottle. Big brother has been great with her and gave her a kiss goodnight tonight before going to bed.

Looking down the road ahead we have multiple followups with the pediatric program at the Children's hospital to check her progress and watch for any developmental challenges. We will also have another Neuro check in July to check her MRI and another EEG. At 6 months they will check her again for any signs of seizures, if none exist then hopefully we can stop the anti-sezure meds. Until then she will keep getting a small does every day as a precaution. Finally, they enrolled us in a program in Meridian that will do a lot of the same things that the hospital will. They will check her in a few weeks and evaluate her for any issues. If there are any they will create a therapy program to work to correct any problems. If none exist, then they will continue to monitor her as well for any challenges.

The final hurdle will hopefully be a test that is administered by a doc at the Children's hospital on her second birthday. If she is still doing as well as she is now, then they will hopefully consider her fully recovered and stop the monitoring process.

We will continue to update with each follow up as we travel this road.

The Adventures of Mackenzie Jane - Update 1

A few days later we have much to be thankful for and hopeful for the future. 

Mackenzie's kidneys have finally kicked in and are starting to function normally. Her electrolytes, sodium, and a few other labs are all back to normal. There is a particular test that they are watching that shows the kidneys were damaged has finally started to decrease meaning that her kidneys are healing. With her labs showing such vast improvement they were able to remove the umbilical IV line so that her belly button can heal. 

She is being weened off of oxygen slowly. She spends a few hours without it and then gets a smaller rate of flow once she needs the help again. 

She began getting formula feedings  yesterday at 4 cc's every 3 hours and that has continued. This morning they doubled her dose and allowed her to be fed by bottle. WE FINALLY GOT TO HOLD HER. Lauren was able to feed her the tiny bottle and hold her for a while this morning. As the day continued, her feedings continued to go well, so the docs had her feeding tube removed.

The big news of the day were the results of her brain scans. The MRI was completed last evening and the results although not what we hoped for, were what everyone was expecting. The scan showed that MJ did suffer a brain injury as a result of the blood loss and lack of oxygen pre and during delivery. The good news is that the injury locations are all far away from the brain stem and cerebral cortex. They are in parts of the brain that don't fully develop and activate until 2-3 months into life. The neurologist said that the miraculous thing about babies is that they are able to survive and recover from injuries that would be catastrophic to an adult or even an older child. His hope is that as MJ's brain develops it should compensate and wire itself to avoid any injured areas. He can't offer too certain of a prognosis. He expects that if there are any developmental problems that they will hopefully be minor. We will continue to get MRI's completed periodically to monitor those damaged areas to make sure they improve or at least do not increase in size.

Her results show that she did suffer a seizure during delivery which is where the damage came from. As a precaution they have had her on an anti-seizure medication that she will continue to be on for at least the next six months as we monitor her progress and development.

The EEG results will be discussed tomorrow, it should give us a better idea if MJ is still at risk for future seizures and help the docs finalize a plan for the short term and look at options for the long term.

All in all, we have so many blessing and things to be thankful for. We, again, cannot thank everyone enough for their thoughts, prayers, and good will. We will continue to update everyone as we learn more about our little girl's future.

The Adventures of Mackenzie Jane

Hey everyone, a few people have been asking us exactly what's going on with Lauren and our sweet little girl.

I have included the timeline and details as best I can below. We have talked and will continue to try and update the blog as we get more news about Mackenzie over the coming days.

As some of you know Lauren was having some severe varicose vein problems during the last half of her pregnancy. As a result doc wanted to induce her on her due date. We were both torn about what to do. It wasn't completely medically necessary but very reasonable for Lauren's issues. All the way up through Wednesday morning Lauren was back and forth about going through with the induction. Thanking the Lord today that she listened to her instinct and decided to go through with it. It saved our baby's life and probably hers as well.

Lauren started the induction process on Wednesday afternoon and things went well. Baby looked good and contractions and dilation were starting to pickup. Everything went well overnight as she was having small contractions all night. They started petocin around 430 Thursday morning and things started picking up even more; stronger contractions more dilation, things were moving along well. Around 530 her water broke and was really bloody. The nurse checked her and called the doc who all agreed that it was probably just water and some cervical bleeding as a result of labor but wanted to be safe so they stopped the petocin and gave her a drug to stop contractions to monitor her and MJ. Doc rushed in for the day and came in to look at Lauren and check MJ. They did an ultrasound and everything looked good. Doc wanted to watch baby for a little and if she didn't like it we were gonna go with a c section as a precaution before it became an emergency. MJ was having minor dips in her heart rate during each contraction. Even after the contractions stopped, her heart rate still dropped a little in small, barely noticeable increments. The doctor watched MJ and she didn't like that her rate dipped just a little bit so they went in for the section. The hospital wanted her to wait until after another surgery in front of us so the doc declared it an emergency so they would be first in line. So they had to put Lauren to sleep because it's faster. Once they opened her up the uterus was full of blood and they thought it was just an abruption. MJ came out white as a ghost and not very responsive. It turns out that Lauren had a condition called Vasa Previa which is a problem where the umbilical cord attaches to the placenta wrong. This caused the umbilical vessels to be weak and when her water broke it ruptured two major vessels on the cord. The blood was some of Lauren but mostly MJ's.

They suspect MJ was hypoxic for a little while and suffered some damage from the lack of oxygen. She has some kidney and liver damage and possibly had some seizures right after birth. So they sent her to the children's hospital NICU in Jackson to receive a cooling treatment where they lower her core temp to 93 degrees for 72 hours to prevent swelling of the brain and help her body recover. She is responding to treatment, but we are really holding our breath for the MRI and EEG (brain wave study) to determine how much if any brain damage occurred. There's no way to know until then. So all we can do is pray.

The condition Lauren had her doc mentioned right before the section as a potential cause but doubted it because it's very rare and she hadn't seen one in over 15 years. There is no way to diagnose prior to delivery, no way to see where the cord is on the placenta so it's a gut call by the doc if there is a lot of blood. Doc talked to me after Lauren was stable and back in our room recovering. We were very lucky that we were already in the hospital. If Lauren had gone into labor at home and broke her water outside the hospital, the outcome would have been dramatically worse for them both. So we are very blessed that the good Lord gave them both back to me, just a matter of time to see how strong MJ is and how well her body can recover. We got some hopeful news from her neonatologist this morning. But we still have some hurdles to climb and the great unknown of her brain injury. Only time will tell. Lauren and I do not have the words to express our gratitude for the outpouring of support and prayers from our family, friends, and co-workers. Please continue to keep our sweet little girl in your prayers as we wait and hope for the best.