Life!!

As we have been in Michaigan these past three weeks, it has been an emotional roller coaster and very stressfull with everything that Mallory has went through.  With these challanges you would think that other things (small things) would be easier or go better, but they haven't.  Yesterday after being moved three times in our hotel, because they messed our reservation up three times, they decided to have their employees move our stuff and worst case scenario, the baby clothes that were sent for Mallory, her take home outfit and a credit card are gone.  The police have been notified and they are looking into the theft of these items. We know that there is a reason and a plan for everything, but sometimes you just get beat down so much you wonder what else is going to happen!!

Then you get the next thing...Mallory is set for discharge tomorrow!!!  This news couldn't be better timed for us!!  She has been fighting so great this whole time and been getting most of her food from a bottle that she is ready to go home!!!  So we set out to find her a new take home outfit and of course as proud parents, had to show Mallory to the register clerk.

We know that there is still a long road ahead for us as she has went through a huge surgery, is only weeks old and has a life altering defect.  But the great thing is we love Mallory a lot, will provide her with everything she needs, have a great support group in family and friends and best of all is God's hands are in control of everything with her and us!!!

Small Blessings!!!!

Mallory continues to amaze us everyday. We were told yesterday that she was being moved to moderate care, this means we're one step closer to going home. She is now on room air oxygen and continues to tolerate her feeds. Today we are still waiting on a room to open up on another floor, but she continues to progress. Tonight we got to bathe her and for the first time dress her!! After a few setbacks last week we are so happy to report that we are getting close to going home. We both feel so blessed to have Mallory in our lives, along with the support and love from family and friends.

Well after a week of ups and downs, today may be the start of some steps in the right direction. After being extubated on Thursday afternoon and going straight to a sipap, the thoughts by the doctors were that after a day or so she would be turned over to cpap and then high flow o2. Of course Mallory had other plans. Her friday morning x-ray showed some "fluffiness" in her left lung so they decided to keep her on sipap and continue with lung conditioning and recheck the next day. We were able to hold her that day and although we enjoyed it, she seemed to not tolerate it as well as lying in her bed. Her o2 sats continued to drop and another X-ray was ordered, showing both the left and right lungs were "fluffy". Also, talks about the function of her diaphragm continued. All things to make us worry and start asking more questions. Saturday was another day of continuing on the sipap, dropping sats and lung conditioning. We were able to hold her again, but we enjoyed it more than her as she didn't tolerate it well. So that brings us to Sunday...when we walked into the room they were doing the echo cardiogram to check the function of her diaphragm. We were also told that her sats would drop off/on throughout the night and that she also had a fever and they have started antibiotics. Good news is that the echo showed the shunt and the diaphragm are both functioning as they should. Also, today her sats have stayed in the 70's all day. First time since she has been extubated and no more fever! They have lowered her o2 on the sipap to 45% which is the lowest it's been since she started Thursday. So I consider this to be a pretty good day. Progress not perfection is our motto now!!

Moving Forward!!!

Mallory is finally back off of the ventilator!!! After a 3 day setback she is actually past where she was when they took her off of the ventilator before. It is so nice to be able to see her personality (which lets you know when she is not happy)and her awake then sedated while she had the ventilator. She still has a long way before we are in the clear with the ventilator, but this progress has been really good. She also now has all of her tubes that were in her body taken out and finally getting some milk in her belly. Mom and dad are also able to touch her and let her strong grip get a hold of our fingers. The last bit of great news is she took her pacifier again, which is great, as they tend to forget how to do this. Which makes it even longer before they can feed without a tube.

Roller Coaster

With the stress that we had yesterday before we came back to the hospital early this morning we decided we were going to come in with a positive outlook for today and know that Mallory would make great strides today. But she had a different plan, the whole day we have been fighting each of the lungs failing. The nurses today fought all day to get the left lung opened after it collapsed this morning and then as soon as it was cleared out and 5 minutes into the shift change, her right one failed and all of her sats dropped. There is no worst feeling you can have then a bunch of different people coming into the room all looking at different things, X-rays happening and not being able to do a single thing for your child but watch and pray!!! The one good thing from all of them being here is knowing they will do everything they can to make it better and get her back on the right track, which is what they did. In the process they were able to get a lot of secretions out of her chest, which actually put her further ahead then where she was before the collapsing!! This roller coaster of emotions and feelings is something that we wish no one ever has to go through, but we can also say that we would not want to be anywhere else then right here with our little girl!!! Which from the picture below you can see she is just hanging out now.

Big Day!!

As we were driving to the hospital this morning we were thinking of all the things that Mallory was going to be doing today, getting a private room, chest dressing coming off and best of all getting off of her ventilater. This was going to be a great day for her and us, but as we have been told it will be a rocky road. Her private room was great (as mom couldn't ask anymore of when do we get our private room) as she now has walls and more room around her. She was taken off of the ventilater around 11 and was doing great breathing by herself, she was even taken off most pain medication so she could start acting like herself again. We were so happy to see her awake, alert and being able to cry and make noises again. Then the bumpy road hit, her breathes were too shallow and she was not getting rid of her co2. So, they had to put the ventilater back in. This was tough as she has been doing so great and dealing with everything so wonderfully. The doctors and surgeon said this isn't a horrible thing as they often have to do this, but still as a parent you want to see them continue making great progress and be able to go home as soon as possible. During her bath they did remove her chest dressing, so we see it as 2 out of 3 big things happening is still great progress!!!!

Next Milestone

Mallory has now reached her next milestone with her chest being closed.  After having her chest open and heart exposed for three days, it is now zipped up and she is part of the zipper club!!!  We had to zip her Bummer Bear up also!!  We are so proud of her as she has fought so hard and her body has done so well with all of the changes that she has went through!!  We have to contribute all of this to the prayers and thoughts that she has received.  The nurse also said that we might be able to hold her again on Monday!!  This will be another great day for us to be able to hold her and comfort her and us!

 

Almost A Week!!

As Mallory is almost a week old she has gone through more than most other people do in a lifetime and has been so strong through all of it. Today she is still recovering great with her swelling greatly reduced and is expected to have her chest closed tomorrow morning or afternoon. This is a big step as it means that they will start getting her off of her machines and medicine and closer to coming home. We have been so blessed to have such great nurses and doctors that are constantly looking after her and keeping us informed as to what they are doing, which is a great thing as they have to continually adjust things to find the right settings to keep her vitals at the right spots. We have also learned so much about so many different people and how people have all kinds of struggles in their lives and as friends and family pray for us, please keep al those other families that are here and all over the world in your prayers also.

Surgery Update

Mallory has made it out of surgery and according to Dr. Bove she is doing great and the surgery was exactly how he expected it to be, "boring"!!! He said all of her vitals are great and that her chest will be open until her swelling goes down. All of the prayers and thoughts have been answered so far and we continue to hope for good news for the rest of the recovery from this surgery.

Surgery

Mallory is back in surgery now. She was supposed to go at 7 this morning but because of scheduling issues she did not have to go back until 11. We are glad about that because it allowed us to hold Mallory from 5:30 til they took her in. Now we wait for updates from the nurses. Thanks for all of the prayers and thoughts from family and friends!!!

Changes

We are learning to adapt to many changes through this process. We finally settled into our "permanent" home away from home while being in Michigan. The schedule of our daily life has changed so much..the little things in life that we took for granted are the things we are missing. Being so far from the girls is an adjustment, along with the highs and lows throughout the day with Mallory. It's a learning process for all of us. We are so grateful for being able to be at a hospital where we know Mallory will have the very best care and that we both have the love and support of each other and the prayers and love from family and friends.

Mallory is changing herself...we spent about 5 hours Monday night with her wide awake looking around at mommy and daddy and holding our fingers. Pretty exciting because she has been sleeping during our visits. The nurses and physicians on staff keep reassuring us how great she is doing, which makes us feel more at ease. The surgery is scheduled for Wednesday morning. Another change, as they call it in the PTCU she will become part of the "zipper club". As for today were spending the day admiring our little grinch.





Update

So after just a few days the roller coaster of emotions has begun! Having your baby within arms reach yet not being able to pick her up when she cries or hold her has to be the hardest thing in the world.  Everyone will tell you how it's going to be or what you should expect, but until that moment happens you have no idea! After getting discharged and moving into the Ronald McDonald house yesterday, we spent the afternoon looking at Mallory through a tent. Last night after dinner and the nurses shift change, we headed down to spend the evening with our little grinch...it turned out to be a great night. We got to hold her for about 15 minutes each, give her a bath and assist the nurse with other little details...just what we both needed!

Then day three begins....we were at Mallory's bedside during the morning report so we got to hear all of the updates. Her labs seem to be staying within the normal range and her temperature had come down so if it continued to be normal the antibiotic would be discontinued this evening. They were going to increase her fluids and start her on Lasix..to get rid of fluids..silly it sounds, but they reassured us this was normal...and they are the doctors! Her heart rate continues to stay high, up over 180-190..so this is a cause for concern. They are going to continue to monitor and if it doesn't come down they are talking of intubating her within the next 24 hours. We went out for the first time today, three hours which seemed like three days. When we returned, little miss Mallory's heart rate continues to be high so we'll see what this evening brings.

Thanks for everyones thoughts and prayers for us and for Mallory!!  They are much needed!

First Day!!

Mallory is now one day old!!  After mom was able to hold her for about 10 minutes, she was taken to the PTCU to wait for surgery.  So far she is doing very will with having the so called "normal" problems.  Her breathing is very quick and she is keeping to much co2 in her body.  To help with this, they put her in her "tent" (not a camping tent) with meds.  While she is in her tent we are not alloed to hold her, but anytime they have to lift it up for a test, we try to help as much as we can so we can touch her a little and dad sneaks his fingers under it when the nurse isn't wathcing.  Family was here to visit and Mallory's big sisters were able to see their new sister.

Mallory Has Arrived!!!!

At 2:58 AM on January 6th our little girl arrived. She was 7lbs and 19.5"!!!! Mother is doing great and Mallory is getting ready for the PCTU!!

Time For the Baby!!!

With our first full day being in Michigan, we are now in in our room waiting for an induction. We came to the hospital this morning for our last NST and a fluid check. During the fluid check it showed the fluid was low. So here we are...waiting for Mallory!

We Have Arrived!!!!

Well, both of our minds are at a little more ease as we are now located in Ann Arbor!!! We made the four hour trip from our home to be here with the due date being the 6th and an induction set for Sunday. Now we get to wait and spend time together before our little grinch comes!