High Blood Pressure and IVIG

Sam had IVIG today. I am so very thankful that they got the IV in on the first try and things seemed to go smoothly for the first couple of hours. After a little while Sam's blood pressure started creeping up. I am not sure what this is caused from, if it is a cardiac issue developing or if it is a reaction to the IVIG. Either way I am anxious about it, not sure what they will do if he reacts to this IVIG product, as this is our third one. He started on Gammagard, was then switched to Gamunex, and now is on Privigen. Preston was also started on Gammagard and he is tolerating it well so far. Sam's pressure got as high as 140-170s over 85-105! So scary! Prior to letting us go home his systolic had come down to 127, but the diastolic was 98... We will be headed back to our pediatrician on Monday for a re-check. Prayers that it resolves please.

My big girl

I had a follow up with the pediatrician today for Paisley. I am happy to announce that her weight has taken off finally. The doctor was hoping that she would gain between 15 and 30 grams a day. Paisley has intermittently gained less than 15 but never more than 22grams since we have been home. Well her weight gain this past week has averaged her out to 37.5grams a day!!! I am beyond excited about this. It is always so frustrating to have a great milk supply and to work so hard to get a NICU baby to latch on only to have them not grow well :-( It is something I certainly have beat myself up about. I can't keep them in until they are full term, so I always hate that my milk doesn't make them grow chubby :-( Well maybe Miss Paisley will end up being my chubby girl. I am really hoping that will be the case. Now we don't have to go back to the pediatrician for a little over a week this time, and it will be for her two month check up! I can't believe she will be two months old already! Time flies :-)

My due date

Today is my due date for Paisley! It feels like the pregnancy ended so long ago and that God has healed my body so much since it has ended. Looking back on those crazy few days, and remembering how disappointed I was that I wasn't going to get my full term baby, I am just so grateful that God brought us through all of it, and that our lives are a testimony to His amazing love and grace. My pregnancy buddy Michelle was due two days after me (this coming tues). She was induced this past week as her doctor was expecting a very large baby. So the other day Paisley and I went to go meet Baby Genesys. She is 8lb 6oz, and seemed so much bigger than Paisley. Seeing how uncomfortable Michelle was, I am a little relieved that I didn't have to still be pregnant today :-) Michelle and I are hoping that Paisley and Genesys will be great friends. Paisley wasn't happy at all during our visit so she is screaming, and while there my friend who is also a lactation consultant pointed out that Paisley is tongue tied, which I already knew...

IVIG and more pregnancy issues

Unfortunately the unit where Sam gets his IVIG is closing soon. I am still so heartbroken about it. It has been so wonderful to go and have the same nurses always care for him in the same room, with the ability to have friends come and spend time with him during the infusion. I am still unsure of what we are going to do next because of the unit closing. This time we went and they got the IV right in and auntie Sara stayed with Sam while I dropped Preston and Sophia with mom as I had an OB appointment. Sam had a blast with auntie Sara, and P and Soph enjoyed their time with Meme and grandpa. My OB appointment didn't go as well as I had hoped that it would. The doctors are getting more and more concerned as am I. My blood pressure was fantastic which is such an answer to prayer. But now I am retaining fluid, and when the doctor reviewed the lab work from the ER, she realized that my liver function tests are already declining :-( She said I am so high risk and have so many issues that I am making them all nervous. And said that I need to call with ANY weird feeling that I have. We are now switching to twice a week visits with the doctor. I don't have any idea how I am going to fit that all in.... So I will go in on Monday, if not sooner. Please be praying that we can keep this little one in for at least six more weeks.

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

IVIG

Sam had his IVIG today. I was hopeful that the mountain dew would have the same affect on his veins as it did last time. His veins definitely plumped up, but not as big as last time. But praise GOD, one stick and the IV was in!!! I am just so thankful! He tolerates it all so well, but this past six months or so a few times he has tensed up and become visibly anxious, even if he doesn't do anything with that anxiety. So it is even more pertinent to get those lines in on the first try. I am just praising God that all went smoothly. We were also blessed today to have his friend Berto come and hang out with him throughout. It was WONDERFUL! God really does put friends in your life for a reason. I just watch him for hours have so much fun today. Berto is several years older but they really connect. I am praising God for friends that get us through the hard stuff. I have thankfully had some wonderful conversations this week as well. I so often get overwhelmed with the thought of my family moving away, but am so blessed to have my Christian family surrounding me, and loving my family and giving us more people to love too. I am so blessed. Sophia still seems to be struggling with whatever this GI thing is. She is slowly getting better, but has still had some discomfort, increased gas and poor eating. The X-ray of her belly essentially came back normal, the stool studies have come back abnormal again. Today when I spoke with our pediatrician she was actually contacting the boys GI doctor to see if he had any recommendations. Gosh I really don't want to start doing all kinds of crazy doctors with Sophia.... Sophia and Preston got to have some one on one time with Daddy this afternoon and evening while Sam and I were at IVIG. They both were worn out from their adventures with Daddy. Preston fell asleep holding his FAVORITE toy of all time, his school bus.

IVIG

They both REALLY ENJOYED some popsicles!!!! Sam had his IVIG today. It went ok. For some reason he was very anxious and jumpy today. His veins also were pretty poor. But I am praising God that Carol got it in on the second try. And that all went well. Sam is such a trooper and he was so good to Preston today while he was there. It is certainly becoming much more difficult having Preston with me now that he is a runner. He feels completely comfortable running all over the place and doesn't like to be confined. But all in a all a good day. Sam had some elevated blood pressures today but praying that it is just a fluke. He is starting to gain back some of the weight that he had lost as well. He weighs 46.4lb and is 48inches tall! Getting so big

IVIG and Soph is still sick

Today Sam had his IVIG. On the way into the hospital he totally wiped out on black ice in the parking lot, but thankful he is ok. He will probably have quite the nasty bruise on his leg tomorrow from the fall but otherwise he is fine. We had one of our favorite nurses today, although there are so many that we love at Heywood. Nurse Carol is one of our favorites. On Sam's first admission to the hospital after discharge from NICU she was our nurse. She has been our nurse many times through the years, for Sam and now twice for Preston. We are praying that in 2013, the only time there is a need for nurse Carol is for IVIG :-) But in case it isn't we are so blessed to have her. She got the IV in on the second try which is great, I love when it is the first try but that doesn't always happen. Then Sam played a lego game on the website about Pharoahs. I got to do a little reading which I love to do and don't often have much time for. And then I played SuperHero Uno with him. It was so fun :-) Praising God for a good day!!! But also anxious becuase Sophia is still feeling yucky and coughing lots.

Mass General Hospital and Mr P's ambulance ride

So we transferred down to MassGeneral today. Even though we had been speaking with MGH all week, and they had been saying that they wouldn't do anything different we have been transferred today because he has been sick way too long.... They are htinking there is something more to this than just the intestinal infection. They are talking about ultrasounds and upper GIs, and scopes, and infectious disease docs etc etc. YUCK! He has been fairly miserable since we have gotten here. But is currently finally sleeping. We will be seeing the infectious disease docs in the morning, but for now we are on isolation precautions and aren't allowed to leave the room:-( At our home hospital I had a bed to sleep in but not here:-( Praying that this doesn't screw up my back.

When I started buckling him in his carseat at Heywood, he was so excited. He was smiling from ear to ear. I bet he thought we were out of there and going home. He seemed to enjoy the ambulance ride, and was awake for the first forty five minutes or so, then slept for a little while. And then woke up about 10 minutes before we got here

He was so cute with this phone for the five minutes he let me put him down today. The poor kid even cries if someone else holds him for me to go to the bathroom. He was actually calling "Dada" into the phone. He wants Daddy to come rescue us, and I do too! Please continue to pray. I know God is way bigger than this! God will be glorified in this situation is my prayer. Please pray for peace and healing for my boy:-)

Thankful for the little things....

It is SSSOOO HHHARD being in the hospital, and away from the rest of my family. I am so very thankful for the friends and family that are lifting us up in prayer, and for the trip I got to make home today to shower while my mom stayed with Mr P. I am thankful for the nurse Jan today bringing me in some Reese's. I am thankful that all of our nurses have been my friends. I am thankful that our babysitter has been so flexible and available to get Sammy on the bus this week. I am so thankful for Shannon keeping Sophia and loving on her. I am thankful that the other day when our dryer started sparking that I heard it and we dind't have a fire, but then when we called the repair guy he said it would be several hundred dollars to fix. But praise God all that is wrong is that a screw fell out of Matt's pocket and nothing is actually broken. Mr P threw up several times throughout the day today but I am so thankful that he was able to take a tubby, and that that made him so happy. He weighed 19lb 6oz today

I am thankful that Matt and Sammy have had some special times together since I have been here. I am thankful that I have a bed to sleep in and we have our own room here. I am thankful that the x-ray they did of Preston's belly today was ok, and believing that the repeat tomorrow will be ok too. I am so very thankful for all the many blessings God has shown me this week.

Vomiting continues...

The vomiting has continued today for MR P, but he has tolerated nursing very well so at least he is keeping that down. They were able to get the IV in on the third attempt. And I am praising God that it is working well, and so far he has gotten two doses of antibiotics in it. He has had periods of happiness/contentment, and I was just rejoicing in those moments today. And then there were periods where it seemed as though he was in complete agony. Poor guy screamed for more than an hour. I sang every hymn, praise and worship song I could think of during htat time. I am so thankful that I was able to eventually sooth him while singing to him about God's love. It was certainly a rough day, but I am praying for a restful night and discharge tomorrow (I hope)....

Hanging in and praising God

Preston had a fairly good night last night. He slept much more comfortably than he has in over a week. Unfortunately his IV blew and they had to restart it this morning, so he got stuck 5 times today:-( Poor little bug. He was also allowed to eat some bananas but he vomited them. So unfortunately due to the vomiting and difficulty with starting the IV, we aren't going to be going home today. :-( Please continue to pray for my little munchkin. He has lost four ounces today too.... As we sit here I can't help but think about how richly God has blessed us. Sometimes life is so busy that we get caught up in the hustle and bustle and don't have the quiet moments to think about how God has carried and blessed us. So in the quietness I have been thinking and I am so so incredibly blessed. Just since this illness... -my friend Stephanie has been making food that is safe and yummy for Sammy. She has taken the extra time to find recipes and ingredients that are good for him -Shannon has taken Sophia and loved on her like I like to do, multiple days, and brought her to and from school -our Aunt Terri, has come over and helped clean, fold laundry, babysit the others, cook, and pack lunches/bags etc. -I got pick me up flowers from my mom, and she came first thing this morning to bring breakfast and let me take a shower -Paula came last night to give me someone to talk to and brought food to eat and Mr P got some snuggles from Auntie Paula so mommy got a break....

-and countless other friends have texted, prayed called etc offering all kinds of assistance. God is so good to me!!! I know I have spoken of Laura Story's song "blessings" before, but I feel the need to share it again. It is so inspiring to listen to this song, especially trying to focus on the blessings surrounding this situation, instead of the hardness of letting people poke at him...

When life is just too busy....

Gosh I just can't keep up these days. This whole back thing has totally slowed me down, but becuase I am moving so slowly I am running behind in EVERYTHING. We have had a crazy busy few days but are doing ok. Sam had IVIG on friday and it went well. The IV went in on the first attempt PRAISE GOD!!! Such an answer to prayer on that one. He tolerated the infusion well, and he was able to watch that new movie that was released "The Lorax." Which my kiddos really enjoyed. They had watched it in the theater when it was first released but hadn't watched it since. So he really enjoyed it. And I was so blessed to have Auntie TeeTee join us for the infusion. Preston has had a really rough last week or so, with loose stools, irritability and poor appetite. So I was so thankful to have auntie TeeTee to help with Preston, and she has always wanted to come and support Sam during his treatment. Auntie TeeTee lives in Oregon, but we have been spoiled having her around the last few months, and have really enjoyed spending lots of time with her.

And then on saturday my youngest sister needed a ride to work so I drove over to my parents to pick her up. I left Sam there with my dad when I brought Doreen to work. When I came back to grab Sam there was a guy outside talking with my dad. He introduced himself to me and called me "M'am", so I totally was thinking he was military. And he was. He was a buddy of my youngest brother Dennis' who when Dennis had met up here recruiting. He was coming over to my parents house to help my parents with their yard. Since my dad has been struggling so much health wise the last several months he has been unable to do all the yard work. So God bless this soldier who spent his day off, edging, line trimming, weed whacking, poison ivy killing, and lawn mowing someone else's house. My dad made comments such as that he felt guilty, and this man said "Don't ever feel guilty, Dennis is my brother and that makes us family, and families help each other..." What a tremendous blessing! I can't even say how much it blessed my heart to see this this weekend. I know that God has filled our lives with absolutely amazing people who truly are gifts from God, but I am just so thankful for our military and for the sacrifices they make here and around the world. Thank you kind men/women for your service EVERYWHERE! And thank you sir for blessing our family so tremendously!!! The kids had a BLAST riding on his lawn mower with him

Please keep Preston in your prayers. He has had a really rough past week but since thursday it has been even worse with explosive diarrhea, and now a rash that looks eerily similar to chicken pox. I am praying that it isn't as we have been around lots and lots of people, but am not sure yet. Poor guy has been having lots of diarrhea and fussiness though. We will be headed into the doctors tomorrow. I also have my MRI of my back tomorrow so please keep that in your prayers as well. Thank you so very much!!!

An ER trip for me:-(

So after the craziness of VBS, Soph's pneumonia and bringing all three kids to IVIG last friday, I had to work. I worked friday night and had a pretty good night. I went home saturday and slept a tiny bit in the morning. I went into work saturday night and it was a super stressful night. I had a really sick patient and was making all kinds of phone calls to make sure the pt was well cared for. I also had a surgical patient who needed some extra TLC. All that being said I was running around like a chicken with my head cut off for the first few hours of my shift. I got the surgical all taken care of and had to move a bed. And for some reason it hurt my back, I felt like this little pop, and instantly knew that I was going to be a mess:-( I immediately took some motrin that I had in my work bag and kept working. Unfortunately the pt got sicker and had to be transferred to a higher level of care. By the time the pt left I was in a TON of pain, and ended up being sent by my supervisor down to the ER. Now the ER staff was AMAZING to me! I can't even begin to say how wonderful they were. But I was just miserable. I couldn't sit stand or lay without being in agony. They did this spinal kind of injection with lidocaine and then an antiinflammatory. It helped a little to the point where I ended up laying down. They then gave me some IV meds to help the severe muscle spasms. And then I rested until my friend could bring me home. Sunday Matt and Sam were camping so they weren't home, and since they were camping my mom had had Preston and Sophia. So sunday I was able to come home and crawl my butt right into bed. But boy has it been a rough week. I am out of work for a least two weeks and start PT tomorrow. I can't really reposition without tons of pain, I can't lift anything, and poor Preston can't understand why mommy can't pick him up. It has been a rough rough week. But in the midst of it all God always sends a rainbow.... My AMAZING friend Megan has organized a group of people that are helping me care for the kids, and with meals and all kinds of stuff. I am just feeling so loved and blessed right now. I am also feeling frustrated to be needing this much help but again I am just so blessed. So far Tippany came over and took care of me for a whole day with Preston and Sophia. Then Matt's aunt Terri came on monday and tuesday, and BEYOND SPOILED us. The poor thing wasn't even feeling well herself but she took amazing care of us. On wednesday "Auntie" Paula invited us over for the day. And again she did a lot of the snuggling of Mr P and Sam and Soph played with Roberto and Julianna so that was fabulous. And she gave us a jar of HOMEMADE from FRESH TOMATOS spaghetti sauce! We actually haven't had it yet. But I can't wait. I am sure it is going to be fabulous!

We also got some special snuggle time with Meme this week and Darius..

. On thursday I went to my friend Megans for the day. Unfortunately I took no pics!!! And once I was there, she took care of EVERYTHING. I seriously just sat or slept ALL DAY. It was amazing to be able to rest that much. The kids had a blast playing with her kiddos. And then she fed us dinner, got my kids washed and in their pajamas and then we headed home to brush teeth and bed. And today my friend Bethany came over with her daughter Mackayla. Sophia and Mackayla get along so well. And Bethany is such a sweetheart. We have been so blessed by Bethany's generosity. As Mackayla has outgrown her clothes they have passed them on to Sophia. It is such a tremendous blessing. Finances are so tight these days. So each time she brings us clothes I could just cry because it is such burden lifter:-) Sam was reading to Mackayla....

An ER visit

Poor Preston has been so miserable the last few days. Thursday he had a temperature of 103.8 in the night, but then in the morning woke up without a fever and seemed ok throughout the day. Then thursday night he had a fever again, but woke up friday morning without a fever again. I called the doctors office just to talk to them to see if there was any type of virus' going around and there has been. He didn't really have any real symptoms besides being fussy and having a fever. So we were going to wait it out. Our pediatrician was on all weekend so I knew that we could call her if we needed to. So yesterday Preston was very irritable all day and wasn't eating well at all. He wouldn't take any food, his bottle, or his sippy cup. He would nurse, but I was anxious since he has been eating food now that I wouldn't have enough milk to sustain him and keep him hydrated with his high fevers. He fell asleep and sometime around 10pm woke up absolutely inconsolably screaming. He was absolutely miserable. There was nothign that we could do that was helpful. I had given him tylenol and motrin a little bit earlier, he wouldn't nurse, he didn't want to be held or put down. He was absolutely miserable, my husband touched his head and he seemed to flinch from it. So that really scared me. Since he had the meningitis when he was tiny, this really made me nervous. We went to the ER, and they took us right in. He had a really bad ear infection in one ear, the other was pink but not all the way infected. The ER doctor also believes he has a stomach bug as well. Poor munchkin. They ended up giving him a heavy duty antibiotic as a shot. Poor guy cried so hard. And now he will be on oral antibiotics for the next ten days or so. We are also contemplating going to an ENT to get tubes put in his ear possibly. Here is a cute pic of my guy from a few days ago....

Being "that" mom

You know the one I am talking about. They say things like "I don't know how you do it.", or "I couldn't do it." or "I would be so overwhelmed." And you know they mean well and that they are trying to be encouraging. You know that they have no idea what you are going through and therefore they are just trying to be helpful. They don't mean to make you feel like you are "that" mom that everyone looks at a little differently. But being "that" mom the one with the sick kid can sometimes feel so isolating. So overwhelming so frustrating. So often as a nurse, I get the comment that it is so good that I am a nurse, or what would Sam do without me. Yes I am a nurse, but first I am Sam's mom, and that is my most important job. But at the end of the day even if I wasn't a nurse Sam would still be my precious little boy. And I wouldn't change that. I am thankful for this walk that God has given me. I am thankful for all that I am learning through Sam. I am blessed to have my faith being stretched and strengthened. Most assuredly I wish that Sam wasn't sick, that he didn't have to go through so much, but he wouldn't be the same either. God has given us to each other and I am so so thankful for that. Some days are hard, but most days are amazing! Sam is the most amazing little boy! He is kind and compassionate, he is emotional and brave. I learn so much about life and love while loving this little boy. Each step that we take in this journey reminds me that God is the only one that knows the answers and what tomorrow holds. And yes I get frustrated when doctors make comments like "Well Sam is just a mystery." Or "Sam is just being Sam, and he doesn't follow all the rules." But God knows the intricacies of Sam, and God created him perfectly. Sam truly is a gift, and I am so thankful to be blessed with him. So if you are "that" mom, that is struggling with feeling isolated and alone, as you are walking the journey with a kiddo that isn't the same as everyone else, be encouraged. God chose this path for you, He knows perfectly what the plan is and it will be amazing. Some days are truly hard, but in those moments God shows himself stronger. Be encouraged! Be blessed! Be happy! And be thankful! God's got this and YOU in His hands:-) We had IVIG yesterday and had one of our favorite nurses:-) Nurse Carol. Since Sam is gaining weight finally we were only there for about five hours

The LAST IVIG?!?!?!?

Gosh we have been looking forward to this day for what seems like forever. Sammy however is not happy to be done! I can't get over it really. I think he has connected the pieces that he feels better after IVIG and wonders how he will feel during the trial off... We trialed him off a couple years ago and it didn't go very well. But we are going to try again, well that was the plan prior to the fiasco of today. So last month when we came in for IVIG it took 113 attempts to get the IV in!!! It was absolutely horrible. He was such a trooper about it though. Anyways I have thought about that often in the last month leading up until today. And so I have been praying that God would get the IV in smoothly and that is exactly what He did! The nurse got the IV in on the first attemp! So that was fantastic. And it was funny because Sam told Justine the nurse EXACTLY where he wanted her to put the IV in and she did:-) BUT then things started to go down hill... First we had to wait FOREVER to start it because the unti was incredibly busy. Then when we finally started it about forty minutes into it Sam had a reaction. It was so scary, all of his vital signs were affected. His heart was racing, his blood pressure and temp went up, his respiratory rate went up, he got splotchy all over his chest and his arms became mottled. It was terrible. And because of the bleeding disorder he couldn't have benadryl so we just had to wait it out. It took nearly four hours for him to stabilize. Once he finally got back to his baseline we got to go home, but by then it was after midnight. I am so thankful that my friend Sara came with us. It was such a blessing to have her there. PReston was intermittently crabby, and so it was nice to not have to take care of them both alone. I still haven't heard back from his immunologist about what the plan will be now. SO I am hoping to hear tomorrow what he thinks we should do now. I am hoping he is still willing to go ahead with the trial off.....

IVIG day

PS: JT commented on my post the other day, and if you are him could you please email me? mssweetpea2000@yahoo.com I would like to hear more about your EoE if you wouldn't mind sharing Sam had IVIG today. Can I just say how blessed we are to be able to go to the hospital where I work and have my friends take such good care of him while we are there? I love these ladies so much! It was quite the fiasco getting our hospital to allow us to come but it has been such a tremendous blessing to not have to travel to Boston all the time for it. They got the IV in on the first try! What an answer to prayer. They set up the Wii for him and he just played throughout the infusion. Preston just hung out with us and had a blast squirming all over the bed.

Waiting for them to come start his IV. Miss Carol got it on the first try!!!

Just hanging out and playing during treatment After IVIG we went over to Miss Meg's (who watched Soph for the day) and had a playdate. That has been something that is so hard for me to navigate with Sam. I usually try to find someone to watch Soph for his appointments, because three munchkins would be a little bit much sometimes because they are so comfortable at the hospital, and think nothing of wandering around or anything. So Sam is always sad that Soph gets to go have a "playdate" while he has to go to the hospital. But thankfully since it wasn't a school night we got to have a blast over at Megs. All the kids get along so well. Notice Sam is NOT in the group picture, because he was too busy playing!!!

I am so blessed to have this family in our lives!!!!