Playing catch up....

So had my appointment with all the high risk docs on 7/18, and essentially we are in a watch and wait period until something changes. Little Miss looked fantastic on the special ultrasound, and they are saying she is about 3 and a half pounds! Praise God. On Monday 7/22 I had another doctors appointment and non-stress test. She didn't look fantastic on the monitor but looked ok, it ended up being quite a long appointment but she eventually was reactive. Blood pressure was good too. On Wednesday 7/24 I got a very scary call from my cardiologist. She initially got on the phone and grilled me about how I was feeling and if I was having any chest pain, palpitations etc. She said my results weren't good, and that she had to call another cardiologist and would get right back to me. So apparently she called another cardiologist and he made a recommendation for changing the medication that I am on, however the new medication can be very dangerous for the baby. So essentially the conversation was to let them know immediately if I had any worsening symptoms and we would go from there, but to take it easy. On Thursday 7/25 I woke up feeling absolutely horrible. To the point where I was convinced I was getting very sick again:-( Praise God I wasn't! I did have some elevated blood pressures, and I did have protein in my urine which I hadn't had previously. But I was able to come home and was told to go to bed and stay there until I came back the next day.... On Friday I went back and my blood pressures were low! So praise God for that! The results of my 24 hour urine test weren't fantastic but they weren't terrible either. My liver tests and platelets are holding steady! So they again let me come home, saying "Go home and go to bed, don't get up until Monday when you come back." I did have a wonderful friend have a baby shower for me this weekend, and thankfully I begged to go to the shower and had a wonderful time but felt pretty yucky when I came back home and all day yesterday. Yesterday my mom came over at church and stayed for the whole day until after supper. She washed EVERY piece of dirty laundry and folded them and put them away. She also washed all of the bed linens including the blankets! Matt had taken the kids to a church picnic so I was able to really lay low yesterday and focus on growing this baby and spending some one on one time with my mom :-) Such a blessing! Sam had IVIG on Friday and he did fabulously. He had his friend with him and so they played the Wii and had a great morning/afternoon together, while I layed in the other bed until I had to go to the hospital. Thanks to Auntie Sara who stayed with Sammy until he was done. Another wonderful friend is organizing an army of help for me in these next few weeks! I just can't even believe how blessed I am. God is so good to me. He has put some absolutely amazing people in our lives. People are helping with childcare, cleaning, meals etc etc. So very blessed!!! I am headed back to the hospital in a little while. Please keep the baby and I in your prayers. I did unfortunately have some heart stuff going on this weekend and need to speak with the cardiologist this morning to see what the plan is.... On Saturday night I had palpitations but had been napping so when I woke I was sweaty and nauseous. Not completely sure what that means yet.

Pregnancy Update

Well praise God I made it to 30 weeks, at the rate things are going I may deliver sooner than we had hoped. I am so far behind in updating I am just going to do bullet points by date, just to get caught up.... So I had gone to the ER on June 29th. Two days later... 7/2/13 Was told to go to see cardiologist. I went and met her, and she was very nice. But very concerned with my history, as well as the fact that my mother had cardiomyopathy while pregnant. As well as multiple cardiac issues on my side of the family. My blood pressure was good. So she ordered echocardiogram (special ultrasound of my heart) as well as holter monitor. And increased the medication that the ER started to try to slow down my racing heart rate. 7/5 Labs were redrawn at the OB's office, due to the liver studies being off in the ER 7/8 On this date I received a phone call stating that my liver studies were significantly worse, actually worse than they were when they decided to deliver Preston! But due to some other symptoms that I had they were questioning something called "Cholestatis". This is a condition in which the bile acids build up in your blood. There is all kinds of risks associated with this. I also had my first non-stress test today. It was wonderful to hear this little one's heart beat so strong. I did have some elevated blood pressures at this visit, as well as this was the first visit that I had a large amount of ketones in my urine. 7/9 Preston had IVIG at Children's, and all went well, but no pics :-( 7/11 Had another NST test today. Baby continued to look good but I was also contracting fairly consistently. After the NST I went to the OB unit and had an appointment. At this point they informed me that I did have cholestasis, and told the risk of the baby dying. 7/12 Sent to a endocrinologist to try to figure out why so much ketones in my urine. Now having to monitor my blood sugars, four times a day :-( 7/13 Sam's 7th birthday! (I will write a post about it) 7/15 Echocardiogram: praise God this was normal!!!! Another NST, this time the baby didn't look as good as she had been on the monitor. Call placed to high risk obs.... Scheduled in depth ultrasound, and appointment with team of docs on 7/18 Here is an ultrasound pic of my sweet little miracle! I am relieved knowing that God has a plan for each of our lives and that His plan is perfect. Regardless of what the doctors say or think, regardless of what lab tests, and a variety of other tests show, God is in control of all of this!!! Praise God for His miracles! I look forward to holding this little one in my arms, as a testimony that against all odds God's will always prevails!!!

Really hard week...

It has been a rough week for the hospital where I work as well as for myself. On Tuesday we had an emergency meeting with the CNO of the hospital. She told us that they are closing one of the units that I work on, I am completely heartbroken over this and not really sure what God has for me next... I was eight years old when I knew that I wanted to be a pediatric nurse. And that desire has never left. I love my job so much and have been there for almost 11 years. To hear that this unit that I love so much is closing is devastating to me. Beyond it being my job, these are my friends, ladies who I have been with through lots of sickness and scary stuff with pregnancies and the kids. I can go back to a regular position in the maternity/labor and deliver ward, and that is probably what I will do, but I am still sad as it isn't my hearts desire. I am so very fortunate to have a job in this terrible economy and I know it. I have just been so blessed to have such a fantastic work environment for so long, that I just don't want to give it up. I would love to look elsewhere for a job, but with the way Obamacare is affecting hospital reimbursements I don't think that our hospital is going to be the only one forced to make devastating cuts to services. There are 22 of us that are getting displaced. We all have lots of seniority and therefore we can essentially bump someone with less seniority in another place in the hospital. But that is horrible too. I am just so sad about all of it. On top of the lay offs and units that we found out are closing on Tuesday, on Thursday a colleague unexpectedly and tragically passed away. This nurse has been a part of the hospital family for somewhere around 20 years and was a phenomenal nurse. She worked a lot in the ER and the poor ER staff fought desperately to save her life and were unable to do so. It was a horrible loss. Rough week!!!! I will post more tomorrow..... please be praying for those affected by the lay offs as well as the death of our co-worker

Hanging in...

It has been a long weekend, but Preston has summed up the last few days as well as months of our lives with him. We went to a little cookout at Matt's cousins today, and the whole way home Preston was singing "Hallelujah!" It was just such a wonderful reminder of all God has done for our family in these last few months (and always). Preston has definitely had some irritability and some discomfort, but each day is better and better. Today he ate better than he has eaten, his drinking is still fairly poor, which is a little scary as it has been very hot and humid this weekend. He broke out with a rash today, but strangely the rash is on his feet.... I am completely unsure of what it is. I will be calling the doctor in the morning. Thanks for continuing to lift our family in your prayers over these last months, this road with Preston has been a challenge, but I am praising God that He has opened the doors, and made miracles happen. I look forward to sharing all kinds of fun adventures with a HEALTHY Preston this summer :-)

Preston's Transplant

I am so very happy and thankful to tell you how God brought our boy through his fecal transplant today. In October he had a really tough time with the anesthesia, so much so that the nurses were telling me that it was scary for them! So answer to prayer #1: It can be very difficult putting a child of Preston's age under general anesthesia, sometimes there is lots fear and fighting of the mask they use, sometimes there is a shaking and twitching that looks like seizures, and my most miserable experience as a parent, is holding my baby as they go limp and lifeless in my arms with their eyes rolling back in their head as they go under anestheasia BUT NONE OF THAT OCCURED TODAY!!! Preston essentially just relaxed and wasn't nervous. He essentially seemed to just fall asleep in my arms. Aswer to prayer number 2: NO issues at all with anesthesia!!! Answer to prayer #3there were no complications getting to where they needed to go in order for the transplant to be successful, it can be difficult in little guys, but God opened the doors. Answer to prayer #4 No bleeding! This was my anxiety as when Sam had a procedure close to Preston's age he had a big hematoma form in his stomach that ruptured and he had a big bleeding episode. Answer to prayer #5 we are HOME!!! We didn't have to stay over, we have already spoken with the doctors a few times since we left and will probably be calling again in the morning, but we are home! We have some hurdles to get through but we are home and getting through them here... Pictures from today... This is pre procedure. Preston was so happy even though he hadn't eaten in so long. He was happy playing with new toys. And they actually brought the mask they use for anesthesia to him to play with and get used to. They put something in it to smell like strawberries so he kept smelling it. He even let his little toy car smell it... Once they brought him to the OR it felt like eternity before we got to see him again. It was really not even two hours, but it felt like forever. When we were first brought to him he was completely out cold. But looked completely peaceful and comfortable. He slept for almost an hour and a half before the anesthesia finally wore off. When he woke up he was not a happy camper for a bit but he eventually was ok. Since then he has had what appears to be severe pain in his bottom and belly. The doctors have instructed us to give him Tylenol but he is very uncomfortable and the Tylenol doesn't seem to be completely helping. He is trying to be such a trooper, but he is definitely hurting. Poor Sammy has been through so much medically himself that he has really been upset about all of this with Preston. He was so upset yesterday when Preston couldn't eat and was really questioning the doctors plans. Tonight he just snuggled with P and tried to make him feel better. They fell asleep snuggled on the couch...

Hockey, GI, blood pressure, and the transplant

Sam had a hockey game this week on Tuesday. He seemed fine prior to us bringing him to the game, but lasted only a few minutes before he was asking the coach to pull him out. When he came out he was saying that his stomach and chest hurt and was almost in tears. I feel so bad for him. I hate that he has such significant pain at times that it stops him from doing the things that he absolutely loves to do. Preston had a blast at the hockey game this week. He was running around all over the place trying to hit the ball with the hockey stick. On Wednesday I took Sophia into Tufts Floating Hospital for Children. Ever since we saw her pediatrician at the beginning of the month for the diarrhea, we haven't had much improvement so she sent us to GI, just to make sure all was ok. The drive into the hospital and the drive home was absolutely horrendous. But Sophia was so awesome. She usually gets nauseous but she did really well both ways. She allowed them to take her blood and she didn't even whimper or cry. She was polite and allowed the doctor to ask her all kinds of questions and responded appropriately. I am so proud of her. The doctor is thinking that things will just get better, but is checking some labs to rule out food allergies and crohn's disease. It will take a few weeks to get those results back. Since Sam's reaction to the IVIG and the high blood pressure because of it, we have been going to our pediatrician just to keep tabs on it. PRaise God yesterday it was fantastic. 90/60!!! I am unsure of if we still need to keep going now that it is back down to normal. It is hard to believe the road with Preston for the C. diff will be complete tomorrow! I am just so amazed how God has worked this situation so perfectly. We will be heading in tomorrow, leaving our house between 04:30 and 5 am. It will be a long day but I am already rejoicing in God's healing power in my baby boy. Prayers are greatly appreciated.

Worship and praise

Today we were blessed to go to church and worship together as our family and friends joined us. Our church congregation prayed over Preston today, knowing that Friday is the transplant. We are believing and praying for miracles this week! He was so cute while they prayed over him, just kind of looking around with huge eyes and a little smirk. He is so cute!!! I can't believe it is almost june and it is so cold. There were actually supposedly flurries overnight, although I didn't see them. Today it is in the 40s. We are hoping for a nice day tomorrow to celebrate Memorial Day. The kids have some really cute clothes but it is so cold to be wearing them. Our Pastor and church body are very respectful and thankful for our troops. There was a nice tribute today to them as well as some patriotic songs. We also heard from Convoy of Hope which is currently on the ground in Moore Oklahoma working clean up the destruction left from the tornados. My brother in law Tim is still there with CIA (Christ in Action) also working to clean up the devastation. Matt's parents heard from Tim, yesterday, unfortunately his back is bothering him, so would you please lift him up in prayer? That God would supernaturally heal his back, and that he would be able to continue bringing God's love and hope to the people in Oklahoma? Thank you so much!!!

One week and counting...

In one week Preston will have his transplant. I still can't believe the way that God has answered this prayer. For those of you that don't know, we had been fighting with our insurance for months to get the transplant approved. There were multiple denials. And on Patriots Day the GI doctor called us to tell us that he had gone to the board of directors and CEO of Mass General and told them our story, telling them that because of our insurance Preston would have to have a permanent colostomy, at one year old!!! He told them how Preston has been so sick and in the hospital multiple times, and now has been on months of a strong antibiotic that is known to cause hearing loss and kidney damage. And then praise God Mass General decided that they would pay for the transplant! I am beyond thrilled and thankful as we approach next Friday that God has answered this prayer. My little stinker wasn't cooperating for pictures today... Our babysitter has a beautiful new baby named Hadley. She is two months old. All three kids are completely enamored with her. Jenn comes once a week or so and watches the kids for a few hours in the morning. We all love having her here. And the kids are beyond thrilled to take turns holding Hadley. I will be honest though, having this little beauty in my house, makes me a little overwhelmed thinking about what it is going to be like in a few months with a newborn in the house again...

CIA (Christ In Action)

My brother in law Tim is traveling to Oklahoma today to reach out to the hurting affected by the tornados. He will be working through an organization called Christ in Action. Please pray for safe traveling mercies, and that he is able to reach out to the hurting as God's hands extended. I have never heard of this organization before, but am proud to see that God's people are reaching out in times of crisis, in times of devastation, and meeting the needs with God's love. Would you please join me in praying for each person that is affected by these tornados, whether they are responders or victims, that God's love would truly be felt in super natural ways through this healing process

Hockey

Oh my gosh I screamed until I was hoarse tonight. Sam did AMAZING at hockey today. He scored two goals, and assisted with a third. The score of the game was 3-0. I am so sad that Matt had to work and didn't get to see him. I am rejoicing as he didn't have chest pain at all! Praise God!!! The doctor called today, I will bring him in to see her a few times this week for blood pressure checks to see if we have to go back to cardiology. But prayerfully we won't be heading down that road with him. The doctor also called about Sophia today, her repeat lab work is still abnormal. So she wants to check in with the GI doctor for Sophia now. She seems to be feeling better for the most part, she still feels cruddy sometimes but for the most part she is much better. Please be praying for her too.

Gorgeous Day here and can't help but ache for Oklahoma.....

My heart aches for Oklahoma. As I woke up this morning surrounded by those I love and with a gorgeous day outside, I can't help but think of those that are hurting or have been lost in Oklahoma. It makes you really appreciate and not take for granted each day that we are blessed with. I know I complain a lot, and so often get so overwhelmed with medical stuff, but I really and truly am so incredibly blessed. My God is amazing, my family loves and supports us, Matt's parents are helpful, our church is filled with loving and Godly people who pray for us and encourage us, and God meets every NEED that we have and then some.... Today as I have all the windows open and praise music playing I am praying for Oklahoma. I can't even begin to imagine the devastation and heartache. But I know that my God can meet them there in their devastation. And my prayer is that that is exactly what happens, that people turn to Him and that He carries them through this horrible nightmare. Oklahoma you are not alone, know that God is with you, and that there are people around the world lifting you up in prayer

Burns, blocks, and everything in between

We live in a huge old house, the kind that has the huge metal radiators in each of the rooms. We have lived here for several years now but have NEVER used those radiators to heat with. We have always used a wood stove, or coal stove or something like that. Unfortunately living in New England we are still in the midst of crazy weather. WE decided yesterday to use the radiators just for a little bit to warm the house up as it was supposed to get very chilly last night. Unfortunately poor Preston grabbed one of the radiators :-( Poor guy burned three of his fingers. The blisters are all closed and his whole hand is wrapped in gauze but I just feel so terrible that this happened to him :-( Prayers for a speedy recovery please. The kids have been loving playing with some new blocks that Preston received last week. It is so funny to see the differences between the boys and Sophia. When she plays with Preston they use the bridge shaped pieces like phones and have conversations with one another. When Sam and Preston play together they build towers and knock them down :-) I am so super excited Matt and I are going out on a date tonight! It happens so rarely and so it is such a rare treat. My inlaws are going to watch the munchkins while we are gone. The cool thing is I don't know where we are going, and I love surprises :-) It is so awesome to be able to share how God has opened the doors for Preston's transplant with people. I got to share again yesterday about how our insurance had denied the transplant but how God has opened the doors to get it done anyway!!!! It is awesome to share how amazing He is and how when one door closes He opens a better one :-) Please continue to keep Preston in your prayers as we move closer to the 31st, that he stays healthy and that all goes smoothly.

IVIG for Preston

Today was just a plain old horrible day. We all woke up early and the day started wonderfully. We got Sam on the bus and then I quickly went to the library, the doctors office and the bank all before 9am. I then dropped Sophia off at school and deal with a problem with the bank. Namely then essentially "losing" or Savings! I was totally panicked about it. But I had to bring Preston to Children's for IVIG. WE got there and were thrilled to have a different nurse than we normally have. And she was so nice. But unfortunately she couldn't get his IV in, after she tried multiple times, she then had another nurse come and she tried multiple times as well. As a mom, it is just pure torture to hold your child down and allow someone to hurt them :-( It was so horrible. He just had these huge crocodile tears and just kept saying "Mama mama..." It was heartbreaking. They got to a point where they were going to just send us home and have us come back tomorrow to try again. I sent out a text asking for prayers for them to get this one last shot and they did! Praise God!!!! The poor guy was pretty traumatized by the whole scenario but eventually he settle down and was able to play for a bit before the medicine kicked in and he fell asleep completely exhausted... It really made me think today about God's love for me. I mean He knew without a doubt what horrible things would be done to Jesus, when He came to earth. He knew that he would be tortured and prosecuted. He knew that He would be crucified. And yet God chose to allow that to happen, for me! It is such a humbling thought, especially after the day we had today. We serve such an amazingly powerful God, but He is also the most loving gracious God. I can't imagine, I just can't even begin to think about knowing what would happen to Jesus, and choosing to send him still, for me and for you!!!!

Transplant News: When one door closes God opens something better....

As you know we have had quite the struggle with Preston's health over the last several months. It has been a roller coaster ride, of hospitalizations, tons of medications, many doctors appointments, conference calls etc etc. When the GI doctors essentially threw up their hands and said he needed a fecal transplant of he would have to lose his colon and have a permanent colostomy, I was heartbroken and overwhelmed and scared. I knew regardless of what the outcome of the situation was that God would win the battle, and that all things would work for His glory. But I didn't know what that looked like, I didn't know if we would experience miraculous healing, or the transplant (which we were told would be a nightmare to get approval for) would go off without a hitch, I didn't know if he would need the surgery. I didn't have any of those answers... But what I did have was HIS strength. AS we have gone through the last several months of fighting the insurance, and researching at other hospitals to see if there was anything else treatment wise that we could do, I will be honest I got overwhelmed and so sad. I knew that God had my baby in His hands, but I wanted to know the outcome. After we had gone through the appeals process twice now with our insurance and then the outside reviewer, it was really hard. At the last denial, I just said to God "well ok You must have something better for us." I made some initial phone calls to other hospitals and to all his doctors to see if anyone else had any other plans. And then... Monday I got a call from the GI doctor. Now I had no idea what he was calling about, and was shocked when he said that he had good news. I couldn't even imagine what he had to tell me. As every prior conversation from him had been pushing me to complain to the newspaper about how my insurance would allow my child to lose his colon because they wouldn't pay for the transplant. So here we were a week after the final denial and he calls. He proceeded to tell me that he had gone to the President/CEO of MGH and told them our story and how he couldn't fathom giving our child a colostomy just because our insurance wouldn't pay.... He asked the hospital to pay for Preston's transplant. AND THE HOSPITAL SAID YES!!!!! I still can't believe that God has answered this prayer in such an unexpected way! We are so very thankful! We will probably be able to get him scheduled within the next two weeks, and I can't believe that this will all be behind us! Praise God for His answers to prayers!!!

Life is a circus....

Gosh things have been crazy around here lately. We are all doing ok but lots of stress and craziness. Preston has been struggling again medically this past week. His appetite has gotten worse, and although he typically has been an excellent drinker in the process of poor eating, even the drinking has slowed. We got the end of the end official notification about the transplant being denied from our insurance last week. At that point I had just really resigned myself to believing that God had a much better plan and that it was my job to wait patiently to see what happened. I started doing some research and looked into a hospital in Ohio that had a doctor that may treat him. So I started making all those phone calls to see where that would go. It would appear that we could go for a consult, but they wouldn't even look at his chart without us going there, so the expense of that was really overwhelming to me. I prayed about it and didn't really have clarification if this was what we were supposed to be doing In the mean time in talking with his pediatrician we both had come up with lots of questions/concerns etc for the GI doctor as well as his immunologist. Those questions were voiced to the different physicians but I have yet to hear back from them. Last week Matt's cousin contacted us and invited us to go to the circus with them. It was such a blessing, they so generously took care of the admission for us to take the kids. The kids had a great time. It was a smaller circus but they still had a great time. And then afterwards they were playing outside. Chris was holding Preston, when Preston had one of his famous stools that leaked on Chris :-( I feel so terrible about it still, Chris was fine but I still feel bad about it. We also got the opportunity to take the kids to see a brand new baby cow at my friends house, two weekends ago. Sam and Sophia were quite interested in the whole thing. They watched the calf nurse and it ended up being quite the science lesson for them. We then came home and read all about how milk goes from the cow all the way through the whole process of making it. This calf was named Star by my friends children, John and Catherine. Isn't she sweet?