It was so difficult to wake up the girls as they were sleeping so peacefully this morning. I, too, slept very well only waking one time the whole night. If you’ve been following the blog, you’ll know that is miraculous as I was waking every 15-20 minutes at some times and never slept more than 4 hours since I’ve been here.

We were due at clinic at 8:30am and I woke them at 8:15am.  I had everything packed to go, including myself and woke them just in time to dress and leave. I dressed Sinéad while she was in her stroller. We ate breakfast at clinic after we arrived there just 10 minutes late. We walked in at the same time as our nurse practitioner.

Sinéad was feeling MUCH better today.

She played games and we watched some Curious George while we waited. The internet on my laptop was terrible. So the nurse brought us a DVD of the Curious George movie. We only got about 20 minutes into the movie. So now we have to find it this weekend. I love that soundtrack. 😉

When it was almost time to leave, Sinéad took her shirt off and refused to put it back on. So we walked across the bridge with her having a blanket over her but no shirt. Some battles are not worth fighting.

Caitríona said, “I will push the stroller for you because you deserve it!” She was so sweet. She loves helping.

Back at the room, Sinéad was totally herself. Running around, playing, talking with just an occasional cough or sneeze.

We had dinner with our friends who are leaving tomorrow. I’m sad to see them go but happy for them to go home.  Their daughter and Micayah keep in touch still.  I’m sure the mother and I will be in touch too.  Her husband used to come here on weekends and it was nice to be with them all.  They are the kind of friends that feel like family really quickly.  I made a salad. She made lasagna. About 13 of us who have become daily acquaintances ate one final meal together. When it was over and we were cleaning up, Sinéad removed her shirt again giving all of us a good laugh.  She was asking for a bath because of the spaghetti sauce all over her.  She is definitely mine and Aaron’s child – she cnnot stand being dirty at all.  So I had to abruptly leave and get her to our room for a bath since she refused to put her shirt back on.

She was definitely making up for two days of illness by being silly, independent and busy.   I have fantastic pictures of her parading around my private kitchen in nothing except polka training pants and bunny slippers.  It is definitely as hilarious as it sounds.  I’m so glad she is feeling well.

Naomi’s preview photo from Flashes of Hope was posted on Facebook. I cannot wait to get the proofs for the rest of the photos. This is such a perfect picture of a gorgeous girl.

The Dr stopped G-CSF a few days ago to see what Naomi’s real white blood cell would be on its own. G-CSF tells us that there are cells there and helps temporarily to increase her immunity.  It allows her to be out of the hospital while waiting for more engraftment.  Today without augmentation it was ANC of almost 400. Her red blood cells are holding. Her platelets dropped to 13 so we transfused to protect her over the weekend.

In addition to the platelets transfusion, she got a dose of G-CSF today. I am also going to give her another dose on Sunday.  I have all the supplies to run her IVs at RMH and they deliver to me every few days the IV medicines that I need to administer to her. We do not return to clinic until Tuesday. That means that we have THREE days off! After such a very long and stressful week we are greatly looking forward to being off for a while.

The little girls were put to bed fairly early on Friday night. Naomi and I needed some time alone. Cait fell asleep right away.  Sinéad hung out with us for a while since she had taken a really good nap in the afternoon.  She was pretty well behaved until she finally went to bed around 10:30pm. Naomi and I were going to start watching a movie but Facetimed with everyone at home instead and completed the puzzle we started Monday. This was the longest it has taken us to do a puzzle since we arrived here.

It was a week ago today that Aaron left. It feels like months ago. This week was full of so many transitions that it feels like time just stopped. The countdown to Easter is real this year. This Lenten season is definitely one to remember.

I also want to say that we’ve received so many gift boxes. It is absolutely amazing! We have a special something that will be coming back to you as soon as we have time and can recover mentally a bit. Every gift has been appreciated: homemade cookies, creams and lip care, yarn, hats, craft supplies, books, a new mask, puzzles (candy bars! And donuts!)…. I’m missing so much but we love everything.

I am enjoying the Door to Door organics grocery deliveries as well. The produce is so plentiful and fresh. The cost is good. This week I made a cream of celery soup that was amazing. I used bell peppers, onion, celery, butter, milk, and garlic. I will be doing recipes like that each week. It’s been nice to cook here. The kitchen has everything we need. Naomi and I plan to start doing some baking soon. After watching the British Baking show, we are motivated to create some masterpieces.

Here is to hope that April is a better Monday.  Good-bye March!

Whoever sent this mask to Naomi, THANK YOU! It is wonderful! It arrived in a yellow envelope and wasn’t labeled with who sent it.

Today was kind of a blurr. There were so many difficult moments that my body is physically feeling everyone of them but I’m trying to forget about them mentally. I would say today has been one of the 5 most difficult days of my life. I washed, dried, folded and put away 4 loads of laundry and sanitized the room. It took me from 8:30am until after 8pm to complete that because I was constantly being distracted by something more pressing – a child needing me – although I can’t list anything specific right now.  Sinéad had a lot of joint pain from the steroids this morning and wanted to be held all day.  That meant that everything took longer.  Naomi spent some time with our friend here while I cleaned. It kept her away from Sinéad and me cleaning.

Caitríona was my biggest helper today.  She opened doors, carried garbage, laundry, boxes from the front desk, washed her hands constantly and sanitized repeatedly without needing to be told, and was mostly well-behaved while Sinéad was a handful.  When fatigued, none of us were at our best and fuses definitely were short by all the stress of having Sinéad not feeling well.

We walked to that hospital pharmacy for medicines for Sinéad.  Some were not ready so we grabbed Subway sandwiches while we waited.

Eating lunch in the afternoon (because we were running late) was the first normalish moment we got from Sinéad in a few days. She ate well today for lunch and dinner. After a nap, she began to run around more and act like herself. All yesterday and today I carried her everywhere.

But by dinner she was exhausted.  She did eat her whole hot dog and a few tastes of my homemade and very awesome cream of celery soup.  Keeping her seated was really difficult but I didn’t want her running around coughing and spreading germs either.  Please she refused to put her shoes on and that was just gross.

I felt like a yoyo today bouncing back and forth between a mom who needed to offer support and a mom who wasn’t needed and she could do things herself. Still very clingy, and tonight sounding a bit raspy, she does look to be improving well.

She does not like taking medicine and I’ve probably worn more cherry syrup flavored medicines than she has ingested. She is like wrestling a 500-lb monster to swallow 5ml of flavored syrup. She bites me with jaws of steel when I try to pry her mouth open. She spits like a cobra once the medicine is in her mouth. I had to change the sheets on the bed tonight as I tried to get it into her while she was asleep and she starting thrashing around and got sticky cherry syrup all over us both and the bed.

Tomorrow will come. Thank God today is over. Thank God Naomi is still well. Clinic is tomorrow at 8:30 am. Later clinic would be really nice. We are not morning people.

Sinéad had a rough night last night. She had her fingers in her mouth a lot and I could feel 2-year molars coming in. I spent a lot of the night sitting up holding her so she could sleep.  It seemed to be teething.

8:30am we had clinic. Naomi’s labs started coming back quickly. WBCs 1.7; Hemoglobin 9.9; platelets held at 20. It was all good because she wouldn’t need any transfusions. ANC was over 1200!

While there we did some school lessons.

So the G-CSF was halted and we were sent back to RMH within 2 hours needing no care at the clinic. It was an easy morning and we would be due back Friday AM.

Sinéad slept in the stroller the whole time. During the clinic visit I heard her breathing was getting louder. Once I thought I heard a barking cough.

We came back to RMH and made lunch, cleaned our room a bit and then went to take naps. During the nap I noticed Sinéad’s breathing got progressively more concerning.

By 4:30pm I’d decided to take her for evaluations. I contacted Naomi’s doctor and said that I thought Sinéad had croup and he arranged a visit at the ER for us.  I completed Naomi’s infusions, packed Sinéad into the stroller and called a friend to stay with Naomi & Caitríona.

When we got to the ER we didn’t wait at all. They took us directly into the evaluation room.  Sinéad had labored breathing, and occasional barking coughing. She’d barely eaten all day, had a fever over 103 and had little interest in nursing. Her heart rate was high 170s to 180s and her o2 levels were 94-95.

They immediately gave her a breathing treatment. It didn’t do anything. They did a chest X-ray to rule out swallowing something. It was all clear of foreign objects but showed narrowing windpipe due to croup. They gave her steroids and then she started improving quickly.

Before long she was trying to sing with me. I said, “won’t you say you love me too?” She replied with a very pathetic, “too.”  They repeatedly asked if she was always this sweet. I said that she generally is very sweet. We snuggled on the hospital bed and watched Curious George.  Sinéad adores monkeys – 5 little monkeys, Curious George, books, etc.  She nursed to sleep and her heart rate improved so much while she slept on me. Her o2 levels went up to 97-98. We were released at 9:00pm. We came back and ate some yogurt, apple slices, leftover tortilla soup and scrambled eggs. Sinéad ate rather well and repeatedly asked for more water.

Now, we hope and pray that Naomi doesn’t get it. A friend at RMH stayed with Naomi and Cait while I was at the hospital with Sinéad. She also helped Naomi move her bed out of my, Cait and Sinéad’s bedroom and into the living room. For the next few days we will maintain distance. I’ve been very prudent at washing hands and we use hand sanitizer constantly.  Just another bump in the road.

God apparently thinks I am very strong to handle all this alone. I’ve thought to get on my knees and beg and plead for this cup to be taken from me. Except that my children deserve it. They deserve a competent mother who remains calm in scary and concerning circumstances. Instead of begging and pleading for my lot to leave me, I’m holding fast and so grateful for where we are, with a team to support us and physicians who care for my children and the wisdom to know what to do in these situations. But sleep. I’ll just beg for sleep. And countdown to the day I see my husband and children back home.

Sinéad is happy to be back with Naomi and Cait. We were afraid she would be admitted. Naomi broke down in tears when she heard how badly Sinéad’s breathing had gotten during the nap. She said, “I’ve never heard someone sound like that before and it’s horrible to not be able to help her.”  Tomorrow we will go get a prescription of steroids and ibuprofen for Sinéad. Friday she will have a follow up appointment at the doctor’s office.  Tonight, she is in a deep sleep beside me and I’m thankful and trusting that Naomi will be protected. Tomorrow the apartment will be sanitized while Naomi hangs out in our kitchen. That is my plan….

Today was a rest day in every sense of the word. Over the weekend, I ordered groceries to be delivered from Door to Door Organics. Our first order arrived this morning. So I was able to make us some great meals today with really fresh produce.

In the afternoon, Sinéad and I napped while Naomi and Caitríona did some crafts. We also started new puzzles today. Caitríona is working on her own 100 piece while Naomi and I knock out a 500 piece.

The home nurse came today to make sure that I know exactly how to care for Naomi’s lines and keep her meds up to date. It was a bit more difficult while also juggling Sinéad.  She gets IV fluids 24/7 and then once a day I need to hook her up for an antifungal and then the stimulant G-CSF.

We also did laundry today. Having more kids here has definitely made that a more frequent chore. After dinner, we attended a birthday party at RMH for a little girl who turned 4 today.  It was in the long-term kitchen on the second floor.  A family that we were friends with left today to go home.  Their newborn baby is now 5 weeks old and they were released because his health improved.  Another family that we are friends with will leave this coming weekend.

The day seemed very long. All of the days feel very long. Time is so strange.

I was awake at 4:30am.  I started a load of laundry because Cait wanted a certain pair of pants clean.  At 6am, Naomi’s labs finally came through to my app.  Her total white blood cell count more than doubled.  Her ANC was now up over 300, just about doubling again since yesterday.  So, the plan to release her today went into action.

Upon waking, Cait decided that the now clean, dry and folded pants were no longer acceptable and she was to wear her blue dress to celebrate Naomi’s release.  Unfortunately, the blue dress had to hang to dry and was not ready to be worn.  That set off a fit of epic proportions that made us 40 minutes late to the hospital and caused me to miss rounds.  The fit included multiple sets of clothes strewn around the room as she couldn’t find anything acceptable to wear on the day of her sister’s release from the hospital.  I was a horrible mother for not shrinking and causing the dress the pill….  Naomi texted Cait that she was beautiful no matter what clothes she had on and to hurry so that she could help Naomi pack.  That did the trick because Cait then chose her cat leggins (for Naomi) and a comfy shirt (for herself).

When we arrived at the hospital, the Dr. said that she would receive a red blood transfusion, hopefully her last, and her G-CSF and daily antifungal before release.  The nurse case manager arranged a delivery of home infusions and scheduled a home nurse to visit and review the procedures with me.  Her discharge was proceeding for sure!

The day seemed to last forever, so there was a lot of anxious goofing around.  All of the girls were giddy and almost constantly goofing around…. Naomi had a moment early in the day where she refused to eat because she wanted to leave NOW…. and she was angry that discharge was going to take so long…. and she thought she should be released immediately.  The anxiety was obviously getting to her.  In moments like these, I have to be realistic with her and tell her that I understand how she is feeling but she should snap out of it.  She did just that, finished eating, colored her puzzle (yes, a puzzle to color), and played with her sisters.

I packed up the rest of her things and took them over to the RMH so that we could enjoy our walk when she was finally released.  She requested some last photos of her room…

When she was finally disconnected from the pole and IV, she was so happy!

The last thing before she was allowed to leave was that Naomi needed to have the caps on her line changed which required everyone in the room to wear a mask.  Usually, I would take the little ones out while this was happening but since I am being prepared to take over a lot of Naomi’s care including flushing her lines and adding heparin, I was unable to take the little girls out.  Sinéad looked pretty cute in her mask!

We were on our way out of the hospital around 4pm.  It seemed surreal.  There was no elaborate tunnel like her first transplant.  There were a lot of instructions for what to look out for and who to contact should we have any issues.

Naomi is being released on Day +20 – this is a full week earlier than her release from her transplant in 2014.  Her physician said her cell count is rather low.  He likes to see about 100 cells on the slide and we are only counting 45.  This all equates to a rather weak immune system.  So, we will be taking a lot of precautions.  She will have multiple clinic appointments a week, but Tuesday will be our first day OFF in over a month!  She has no appointments (except a visit from the home nurse to train me on her injections to be given through her line) so we can stay at RMH all day.

She thought the cool air felt so good.  She said that after being inside for a month, the air felt nice on her skin.  She had been admitted on 2/27/17 and discharged on 3/27/17.  Also worth mentioning is 3/27/14 was the date we left California to go back to Nevada after her first transplant.

The skywalk between the RMH and the hospital is uphill going to the hospital and downhill going to the RMH.  Caitríona and Naomi both ran most of the way from the hospital.

We stopped at the front desk for deliveries and mail.  Then we went to our room.  She changed out of the dress she had saved for the past month – she never wore it before and saved it for release day.  We opened some boxes from friends at home.  She loves this headcovering.

There was also this fantastic banner from our church friends in las Vegas.  It gave me chills to read all the wishes and greetings to Naomi from all her friends.  I hung it on the wall in the living room.

We went to the lobby of the RMH for some downtime before dinner.

Sinéad very much enjoyed some time in the playroom.  I had kept her out of there until Naomi was released because I knew that once she got in there, she wouldn’t want to leave.  It is like a dream playroom with toys of all types to keep her playing for hours.  There are chairs in there for me to sit and knit which is exactly what I think we will do on Tuesday.

From the playroom, I can see into the living room where Cait and Naomi like to play on the piano.  Sinéad goes in and out of the two rooms freely.  The common rooms are so spacious allowing a lot of room for the children to be children.  It is truly wonderful.

Upon returning to the room, we made Naomi’s bed with the bedding provided by the RMH.  There was a pillowcase, sheets set and quilt all bundled together and tied with a string.  When we opened the quilt, to our sheer amazement, we saw St. Bridget crosses!  St. Bridget is my Patron Saint.  When I went through RCIA, I accepted her as my Patron Saint and credit her with the success of my midwifery career and me heeding the call to pursue midwifery while still in the trenches of raising kids and homeschooling.  St. Bridget is a saint of Ireland, and also a protector of mothers, nurses, children, infants, midwives, homemakers – all the things in life that are near and dear to my heart.  I was blown away.  This was another small way that we have been reminded of the protection and presence of God  through this time.  Throughout our home, we have St. Bridget crosses that are made by Aaron.  They are hung over multiple  doorways of our home.  The idea is that as a person walks under a St. Bridget cross, he or she is receiving the protection of their health.  How appropriate that Naomi is sleeping under a quilt of St. Bridget crosses while here at the RMH?  Amazing.  God is in the details.

With no 4am labs, and no 6am results, we all look forward to sleeping tomorrow morning.  Meds start at 9am and I already have the week’s meds all sorted in the pill holder.  Tonight, I prepared the meds, cleaned up some of Naomi’s things from the hospital, unpacked some boxes, organized the walk-in closet and folded all the laundry.  It isn’t home, but it will certainly do.  Tonight felt more normal than a night has felt in months.  I am so thankful she is back under the same roof as me and has an ANC again and is improving.

Today completed 5 full weeks away from home in Wisconsin. But really it is 6 weeks away from home for me and Naomi because that last week at home she was an inpatient at St. Rose and we were there for 7 full days.

Caitríona, Sinéad and I started the day early. We got breakfast in the family kitchen. Then we made our way to the bridge and over to Naomi for Dr rounds.

It is truly a miracle to see the improvement in labs today.  Today’s labs indicated quite a bit of improvement. Her total white blood cell count doubled from 0.1 to 0.2. Within that white blood cell count, her new ANC is 156 (up from 64 yesterday). Also, her reticulocyte (immature red blood cell) count is increasing. It was 10 when we arrived and is over 13 now. That means her body is making more red blood cells and more white blood cells. She is still transfusion dependent and may need a red blood cell transfusion at any time as her levels fell from 7.5 to 7.2 overnight. This isn’t as much as a drop as she’s had before though.

I have to admit that with her first transplant failing I was afraid we might never see an ANC in her again. I didn’t believe it until I saw it. The Dr said it was there Friday but I didn’t believe it until I had the manual differentiation charts added to MyChart app on Saturday morning. To live through a miracle once is a gift. To live through this twice seems unreal. Just because we’ve been through it before doesn’t mean it is any easier the second time. Illness doesn’t work that way. When leaving Naomi for the night, she said she was wondering if her counts would drop again in the morning. Poor girl is having the same concerns as me. After the first transplant we all had some PTSD. I can’t imagine how changed we will be forever after a second a transplant.

One more day of increasing white blood cell numbers and she will be out of here tomorrow for sure. During rounds, we agreed with our Doctor to stay another night so that she could get immediate care if a fever showed up. With her being off antibiotics, there is a greater risk of infection since her cells are coming in slowly and still so low. With her first transplant she had to have ANC over 500 for 3 consecutive days before being released on Day +27. So tomorrow would be a lovely release, a full week earlier than last time. A normal ANC is 1500 or more. Under 1000 is immune-compromised. Under 500 is critical. Even walking out the door at 200-300 will be risky but she will have daily clinic appointments and special precautions to protect her. It is still a higher ANC than she’s had for weeks prior to the transplant and while flying here.

We rode bikes, walked the halls and played with the play kitchen and Little People in the playroom until Sinéad was ready for a nap. She slept in Naomi’s bed again.

Naomi was allowed to leave the HOT unit for the first time since chemo. It had been about 4 weeks since she went out those doors. We went to the cafeteria to pick up lunch. Then we brought it up to the family area in the HOT unit to eat.  She wanted and ate a huge salad from the salad bar.  That’s my girl.

In the late afternoon, Naomi played Wii with a volunteer so I took the little girls back to the RMH to get a few housekeeping things done in preparation for Naomi to be released soon.
After dinner, we took a wagon to Naomi’s room to start cleaning out the hospital room.

Sinéad fell asleep while watching the baking show which then gave me time to pack the wagon without her taking things back out of the wagon.

Making our way back to the RMH for the night.  Hopefully the next time we go this way, Naomi will be with us!

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Her white blood cells held overnight! It isn’t many but they are coming in and they are from Micayah’s cells. So she is finally starting to grow those cells!  During rounds her dr said, “I’ll cut to the chase. She has sluggish cells but she is ok. They are neutrophils and monocytes. She has very few lymphs. We want that.” Then we all joked about the irony of such an active kid having sluggish cells.  On the manual differentiation, which I requested yesterday and saw for the first time today, we counted a WBC count of 100 and ANC of 65. It isn’t much but it is a good start!

When we arrived today she was awake and dressed. She hasn’t texted for a few days when she wakes in the morning. She said she was letting us sleep. Ha! Sleep isn’t something I do well right now. As I type this it is almost 5am. I’ve slept since about 11:30pm and will likely get another hour of sleep after typing this. But my mind works well to type this all up while waiting for lab results. Naomi gets her blood draws at 4am. Then results are usually back around 5-6am. I am intuitively set to wake around this time and wonder and wait for results. It will change in a few days when she is released. I look forward to that very much!

We are in Green Bay territory. On Friday, having had all my wet laundry hanging, I wore Aaron’s Denver Broncos shirt. I wore a zipper jacket to cover it initially but got warm and took that jacket off. I have not seen a single football shirt except the Packers while here. I was quite conscious of that!

Her Dr looked at it and made a comment about the Broncos. I told him that my shirt would actually be Steelers but that all my laundry is hanging to dry and I was wearing Aaron’s shirt. He said he could respect the Steelers but not that shirt.

So then this morning while we were all there for rounds, I pointed out that Naomi was stoning for my having worn a Broncos shirt by wearing it the Green Bay hat she was given. Dr said that since she is transplanted here that being a Green Bay fan is also part of what she gets from her time here. A nurse joked that the “G” meant “grow” that Green Bay is where we Grow Cells. So then we all laughed a bit and told Naomi to whisper to her cells and tell them to grow…… and keep wearing the Growers hat.

Needless to say, with sluggish engraftment we are still inpatient. Her cells need to come up a bit more before she is safe enough to leave. As we played Forbidden Desert, Sinéad fell asleep on me and then I transitioned her to Naomi’s bed where she slept for over 2 hours! After the game, I fell asleep for about 2 hours. Naomi wanted Daddy to play Wii with her today. So Naomi, Aaron and Cait played Wii while Sinéad and I took naps.  After I woke, I watched them play while chasing Sinéad around on the bikes. Seeing them jet ski and row boats was the funniest thing ever.

In the evening, Aaron sadly left for the airport. We agreed that nowhere feels like home unless we are together. We now start the countdown until we are all together for Easter. Yes, we will ALL be together.

Before dinner, Sinéad and Cait learned how to play dominos. Sinéad did really well matching the pieces and expanded her vocabulary with “I turn” and “flip it around” and “you turn.”  She also became used to counting to 4 to make sure she didn’t have too many pieces. She did really well for 2 years old. I was impressed. Caitríona had her first official reading lesson. We are going to make the most of this time here.

Our first night without Daddy went fairly smoothly. Our goal is to leave Naomi and have her in bed by 8:30pm. Then to have Cait and Sinéad bathed and in bed by 9:30pm. That all worked except Sinéad woke up at 10:45pm and I had to scramble her some eggs for her to eat. Here she is eating some goldfish crackers while I scramble eggs.  After her midnight snack, she fell right to sleep.  I am extremely thankful for the RMH that provides all we need.  It is truly amazing.  After this is over and the medical bills are paid off, I feel led to provide support to RMHC.  They will forever be in my heart after the fantastic experience we have had here.  Here is the link if you choose to do so yourself.  Each RMH is individually run and supported mostly by local businesses, churches and residents.  I encourage you to find a RMH near you, or support ours.

Naomi shared her chair with Caitríona while we watched the start of Season 3 of the Bake off. Maybe that is why Sinéad needed more food at night? She watched a Baking a show after dinner? We all got along very well and all three girls are so snuggly. Sinéad helped me give Naomi her nightly foot rub too.  Such loving girls. It is a fairly common gesture for them hug each other and share toys together.  I know we will have some difficult moments – even more until Naomi gets released on outpatient status. Once we transition her to RMH things will get so much easier for us. But by planning the day well, I think we will do just fine.

As I prepared Naomi for bed, I did my usual clean up in her room.  I sanitized tabletops and her canteen.  I erased the figures on her dry erase board and prepared it for the next day.  But I also set the intention to get out of there by taking a few pictures off the wall and piling them on her desk.  Each night there could be her last as an inpatient.  I may need to make a few trips across the bridge to move her out.  If that is the case, I am ready for whatever that looks like.  As soon as I hear she can leave, I will find us a wagon and start to load it up.  I am thinking that she will still be there through the weekend and expecting her to be released Monday or Tuesday.  I secretly hope he might let her out tomorrow, but Monday/Tuesday is more likely since she has been so slow to start making cells.

We spent all of Friday at the hospital because Naomi is still inpatient status. Her white blood cells are there but not consistent or high enough to be released safely.  The Dr eliminated her antibiotic today with the theory that it is suppressing her WBC count. She also got G-CSF today. We will see if the combination of those two works magic overnight.

Yesterday she had a line and tube change and her pole was reduced to a smaller model which with one “brain” is lighter and faster. She is now literally running in the hallways and we joked with her nurses that they need great running shoes to track her down and catch her. I am still so thankful for her ability to walk/run the halls and not be in seclusion. She played quite a bit of ball today: kickball, volleyball, rough-housing smack ball. It is safe to say that she is ready to run laps as soon as she has a high enough ANC.  She also played video games with Daddy and Cait today. We all hung out in the video room for a while.

Each day could be her last as an inpatient. If her counts are rising a few consecutive days, he will let her out. I had a meeting with the pharmacist today and have all her meds and am fully trained on which need food and which don’t and when she gets them. They provided me with a week pill dispenser to organize it all.

Naomi wanted donuts as soon as she had white blood cells. So we had those today. A friend at RMH picked them up for us in the morning. They were a great surprise for Naomi who had no idea they were coming.

While preparing for bed tonight I was notified through Naomi’s chart that she was receiving platelets STAT. I rushed over to her bed where she was sleeping peacefully but given platelets because she had some bruising on her legs. The STAT report made me so anxious that I knew I wouldn’t sleep unless I saw with my own eyes that she was ok.  So I ran over there instead of calling. I was imagining a bloody nose or some other active bleeding that really concerned me.

I’m undecided whether the phone app with her charts is a blessing or not. It wakes me at 6-6:30am each day with the latest numbers. I get dinged with reports throughout the day. I find myself obsessing a bit now that we are anxiously awaiting a cell explosion. But I’m losing sleep too.

We are at the point where the amount of time waiting is enough to make anyone anxious. So it will be good for me to have Sinéad and Caitríona here with me as a distraction. Naomi is not bedridden and needing 24/7 support which leaves me some time. I was rather lonely before Aaron arrived with the girls. So I’ve decided to keep them both. The Mom in me sees how much they both need me. Sinéad has slept better here with me. She even does well at the hospital because she looks forward to riding the bikes. Caitríona is loving snuggle time with me and we are working on Kindergarten skills while we have all the time in the world. And if the truth be told, I need them more because before they got here I felt lost. After having young children for 16 years, the past month without them was a bit refreshing and a lot lonely.

Naomi adores her sisters and loves having them here. It actually helps her to take her mind off her issues a bit. She will be helping me teach Cait to read and (again) that will likewise be good for Naomi who is not confident with reading out loud but will hopefully become so by helping me help Caitríona.

We were all a bit disappointed to see Naomi’s WBC count drop today.  Before leaving for rounds, I told Aaron that she wouldn’t be released Friday afterall.  I was surprised to arrive at the hospital and see Naomi awake because she didn’t text me like she normally does.  I asked her why she didn’t text me and she selflessly said that she didn’t want to wake her Dad and sisters.

During rounds, Naomi’s Dr. said he went to the lab and determined that the white blood cells she has are neutrophils and this dip is not rejection.  I appreciate that he did not take a wait and see approach but immediately looked for solutions.  So, he is comfortable giving the stimulant GcSF.  In Britain, the protocol is to give this and then release earlier.  In the US, we tend to hospitalize longer (private insurance versus socialized medicine) and wait for blood counts to come up more on their own.  His words were “she is too well to be in my hospital and with THIS mom and THIS child and THIS Ronald McDonald House, releasing her for the weekend is preferable.  The plan is still to release her on Friday.”

Tomorrow, all her meds will be delivered and a nurse will review with me how to administer her IV fluid and infusions through her line. I will also be trained on the pump they are sending her out with.  I did all this after her 1st transplant.  So I just need a refresher course.  They also provided me with a pill box to organize all her meds.  She takes about 20 per day.  Last time she had IV fluids 10 hours per day.  Now, she will get 24/7 and I will need to give a few meds through her line also.

I have not told Naomi this plan in case things fall apart and it doesn’t work out for whatever reason.  She thinks that she is looking at a Monday or Tuesday discharge.  I am excited for her to leave the hospital because it will mean less running back and forth for me.  I may keep Sinéad and allow Aaron to return to a more normal work schedule.  We will still have daily check-ins at the Day Hospital Clinic, but that will be easier than going back and forth multiple times a day as we are now with her being inpatient.

Today was a lot more playing – which is why they want to send Naomi out.  Besides her morning infusions, the rest of the day is vitals and nothing else medical.  Today we did more bike riding, or rather racing.  She literally plays all day.  While we finished our game of Life, Sinéad played connect 4.

Sinéad also climbed on the back of the sofa and looked out the window.  She was quite content for a lot of the day making me think it is possible to keep her here…. but when she got tired, the bear in her came out.  It will only work if Naomi is released to sleep here with me so that I do not have to keep Sinéad at the hospital late into the evening and can get her in bed at a decent hour.

Aaron and I ended up with a somewhat realistic game of Life.  He was a secret agent and me a doctor.  Combined, we had 7 children – 5 girls and 2 boys!  Mine were triplets and a singleton.  His were twins and a singleton.  We both had a few million dollars more than we have in real life though.

Caitríona had a blast playing also.  She was first finished and was Miss Money Bags.  In addition to having a high salary, she had her number landed on often enough that we all lost some money to her.

We have no idea what to expect going into tomorrow.  Perhaps Naomi will be back at the RMH with us for Aaron’s last night here.  Perhaps I will cancel Sinéad’s plane ticket and keep her.  So many decisions hanging on labs.

Naomi was so excited to see everyone this morning.  When I entered for rounds without them because it was too early to wake them, she said, “you actually walked in here alone?  You didn’t bring me Daddy and my sisters?”  It was rather hilarious how excited she was to see them.  Right after rounds I went back to get them.  It felt like it took forever to get a baby dressed and ready to go!  Sinead did NOT like the cold.  She is definitely a summer baby.  It was pathetic how she whined as soon as we got on the “Arctic bridge” connecting the RMH and the hospital.  Aaron and I were cracking up about it because it was almost 30 degrees.  We didn’t think it was as bad as it could get.  I’d certainly had colder the weeks before!

This is the point when I start using a lot of numbers because our lives are revolving around them. The main three values we are looking for is 1) hemoglobin, 2) platelets and 3) white blood cells.  All white blood cells are not alike, so #3 added the clause that we  want her neutrophils, or ANC, to be high enough that it doesn’t look like the lymphocytes are rejecting the transplant.

On Wednesday, Naomi’s hemoglobin dropped to 9.2 (previously 9.5) and platelets dropped to 20 (previously 32). These values dropping is not concerning though because she had transfusions a few days ago and those cells will die off within a few days which is what we’re seeing. The point is that they are not dropping as much as they used meaning that we are seeing production from her marrow (Micayah’s marrow).

Although 20 was the threshold for platelets, she will not be getting platelets today because her Dr changed her platelet transfusion threshold level to 10. He believes she is on the verge of engraftment and he wanted to give her body a chance to make platelets by herself rather than transfuse. After weeks of no white blood cells (WBC), her WBC count was 0.1. If the WBC level continues to rise, Naomi can be released as soon as Friday. She will then have daily clinic appointments.

I always question what to post publicly…. her doctor is really wanting to discharge her on Friday. He wants to see these white blood cells continue to increase Thursday and Friday and then let her loose. He feels that she looks too good to be in the hospital. They are not set up for outpatient transplants but some transplant facilities do offer that. He said, “with this Mom and this kid I am comfortable sending them to RMH with daily clinic visits and monitoring.”  My training and Naomi’s proven ability to cooperate has won us a respectable reputation among the staff here. So we really are just watching the numbers right now.

When I finally got there with Aaron, Naomi claimed his lap and sat with him for hours.

Cait and Sinead had fun riding bikes and vehicles and walking around.

Her activity levels on Wednesday were unbelievable. She and Aaron played volleyball for a long time seeing how many times they could hit the ball back and forth. The highest record was over 50.

So then they were trying to volley using only their heads. That record was 5. It is remarkable actually that Naomi’s platelets didn’t fall more than they did.

She also played in the hallways a lot – mostly kickball with the beach ball; Sinéad and Caitríona rode bikes and we did plenty of walking. In fact, we had been the hospital for almost 3 hours before Aaron even saw Naomi’s room. Sinéad and I returned to Naomi’s room before anyone else. She fell asleep with me. I slept for about an hour. She slept for a little over 4 hours. It was a little slice of heaven for me.

In the evening we watched a video all together in Naomi’s room. Caitríona fell asleep snuggling with Naomi in her bed. There were so many precious moments in the day and the joy the girls had from seeing each other was amazing to see.

We started playing the game of Life.  Aaron and I made to the marriage section at the exact same time.  That was awesome.  We joked that it was a good thing we had two vehicles from the start.  I was planning to take the 2 blue pegs and he could fill his with the 5 pink.

Naomi was so happy to share things with Cait.

I missed rounds this morning. Once I arrived, the Dr came in and said that they were reducing the appetite stimulant she in on so that now she will only get twice a day. He is also transitioning her to taking all her meds by mouth so that we can get out of here all the sooner once we see white blood cells.

We think we are seeing improvements in the labs but remain cautiously optimistic since we’ve been burned by labs before. Her hemoglobin increased from 9.2 on Monday to 9.6 on Tuesday. She was likely due for a platelet transfusion on Tuesday because her platelet count was 34 on Monday and usually falls 15-20 points per day. But she only dropped from 34 to 32 overnight. Fingers crossed and prayers to high heaven!

We had a hard time this morning knowing it was only one more day to endure before seeing Daddy and the girls.  We kept music going all day and kept the blind to the hallway closed most the day as we danced and sang and did our puzzle to pass the time.

We started that fish puzzle yesterday and were about an hour into it today when we realized that it was a “compare the differences” puzzle in which the box gave us an idea of what the puzzle looked like, but there were differences and therefore the box could not help us put the puzzle together.  It them became a bit of an obsession to get it finished.  Naomi and I took turns complaining about the difficulty of it and needing to take breaks.

She went to music/art therapy and while she was there I knitted for the day keeping with the blue yarn since she doesn’t have an ANC yet.  When she returned we had lunch and played ball in the hall with our little friend.  Once we went back into her room, we were able to focus anew on the puzzle.  After a while I looked at the clock and realized that I had only 8 minutes to get back to RMH for dinner.  Naomi said, “quick, get your shoes and go!  The day FLEW by and when you get back I’ll have myself ready for bed.  Don’t forget to vacuum like you wanted to today.”

So, I did just that.  When I returned at 7:30, she was indeed in pajamas and had done her skin wipes for the day and was still doing the puzzle!  After about another hour, we finally finished that puzzle.

It was my least favorite puzzle that I’ve ever done.  Not sure why?  One issue was that the pieces did not interlock well and it kept being bumped and pieces fell on the ground.  I found it quite frustrating for that reason.

Naomi continues to feel great.  Her skin color looked better to me today than it has looked in months.  She actually looked radiant.  She took all 4 mouthwashes without me needing to tell her to do it once.  She transferred all her meds off the pump and into pills with no difficulty whatsoever.

We ended the day by trimming nails, me providing her with her evening/nightly massage and then I cleaned up the room and organized it to provide room for 3 more people to be in there with us tomorrow!

In the afternoon, a nurse was doing her vitals (which I thought is was interesting that her temperature was in the 98 range all day today whereas she had been in the 97 range before and I’m thinking that is evidence of cell activity too!).  While she was getting vitals done, I noticed how radiant she looked and wanted to snap a photo.  She was being silly.  So the video is so much better…..

Monday was a fairly uneventful day medically, and that is a good thing.  Our doctor is back on rounds this week.  He is very prompt and fast so I made sure I was here on time to begin at 8:30am.  He said that he would expect to see some cell activity in the next few days.  He could give a dose of stimulant to see the cells in her labs more quickly but that could increase risk of graft versus host disease.  So we’d rather not.  This is where being patient is so hard.  It could be said that her behavior and how well she feels is evidence of cell activity but until we see the white blood cell count rise we can’t assume it has.  Remaining cautiously optimistic is the goal.

Naomi had a tube and machine change again today.  She was able to get a bath and play ball in the hallway unattached to poles while free for over an hour.   I am truly amazed at how well the nurses and doctors tolerate and actually encourage children to be children in this hospital.  It is common to see a child on a trike being pushed in the hallway with mom or dad pushing the trike with one hand and the pole with the other.  You might also see a child riding a trike a lone and the parent chasing him or her with their pole.

Yesterday, a 2 year old boy here was playing ball with Naomi.  They kicked it back and forth while his mom struggled to keep his lines out of the way.  At one point she bent down to hold his line better and Naomi accidentally kicked the beach ball towards her and it bounced off her head. We all laughed.  The boy was cracking up, doubled over and pointing at his mom.  Then he suddenly rubbed his head and pointed at her and asked if she was hurt.  It was so sweet.  He is used to older children at home as his sister is Naomi’s age (and was here this past weekend and played with Naomi) and his brothers older than the sister.  Naomi is used to younger children.  So the two of them play here together often.  In the evening, he and his mom and Naomi and me all were in the playroom at the same time.  It really helps to have made this friendships.

While in the room today we have struggled to stay busy and distracted from all the anxious events this week.  We started another puzzle during a moment close to despair as we were both extremely sad about missing everyone.  We worked on this puzzle for HOURS today.  It was Naomi, a volunteer and myself.  It is the hardest puzzle we’ve done as inpatients.  It contains irregular shaped pieces and a lot of similar colors across the entire puzzle.  The tiny orange fish throughout the water and the water covering the length of the puzzle have made it a real challenge!  It doesn’t help that the serving tray is about 2 inches too narrow for the puzzles to fit on it well.  A little larger of a table would be nice!

We have been here a month on the calendar now having arrived in Wisconsin on 2/20.  Today marked our 29th day.  4 full weeks.  It was an emotional day for us as we see what is ahead and getting closer and brace for that transition.  We will miss Micayah’s birthday but have a visit from Aaron, Cait & Sinead; we will hopefully see white blood cells and possibly even move out of here but will lose the daily contact with those who are most familiar with here.  Some of our friends at the RMH have left, are planning to leave soon or could be leaving as soon as x happens for them.

It has brought to the forefront of my mind how quickly things change and that life truly moves.  Our current circumstances when uncomfortable or disheartening can feel as though they will never end.  Good experiences are certainly taken for granted.  We made a very difficult decision to bring her here, leaving my home, children, husband, career, having no vehicle or means of taking care of myself provisionally.  Naomi has had to leave everything behind, but really she was losing things continually since last October when her blood counts started to drop again.  It was  a slow gradual change for her.  It was sudden for me.

I can say without blinking that this has been one of the best decisions of my life.  We have been immensely blessed by our time here. Nurses, doctors, social workers, care team partners, recreational therapists, psychologists, other patients, previous patients who deliver treats, weekly chaplain visits, pet therapists who bring their fuzziness at just the right time, volunteers who join us to talk, play and help us do really hard puzzles…. the amount of people who have made this work as well as it did is truly an act of God.  It all seems unreal that within a few days this experience could be over.  We feared it for so long and on the backside, we have been abundantly blessed to have met these people.  I am so proud of Naomi and how well she has handled everything here.  It is so fitting that we continue to spend so much of our time putting together puzzles.  Puzzles are a perfect analogy to life.

Sunday has been a day of knitting, movies, and games with visitors.  There is nothing new to comment on really.  She continues to do well.  We are waiting as patiently as we can for some white blood cell counts.  It is not easy to have patience in this situation.  I find myself waking at 6-6:30am to check the chart for labs.  We have an app called My Chart that gives me access to all Naomi’s information as soon as it is available.  That is what I wake for these days – even before my alarm goes off most mornings.  I honestly cannot remember the last time I woke with my alarm as the thought of blood counts wakes me first these days.  When Naomi wakes, she texts me and it is always the first question she has as well.

Weekends are always very quiet here.  But some other patients had family visiting and Naomi joined in their fun playing video games, board games and hanging out.  I got in some introvert time with audiobooks and knitting.

Her sense of humor was on and she was very sassy.  Here she was hiding behind a menu.  She said, “I just know when I move the menu you will take my picture.”

I tickled her and she acted angry.  I said, “I just know you’re not really angry and trying not to laugh.” She started laughing and I started snapping some pictures.

At one point she commented, “I JUST KNEW you wouldn’t take only one picture!”

“What hairstyle should I wear today?” she joked while getting dressed. Her optimism is astounding and Naomi has continued to, in the doctor’s words, “make my life easy.”  Vitals continue to be within normal range and blood pressure well controlled, decreasing meds again by eliminating zofran altogether, eating very well and staying active. Each morning we check her Tacrolimus levels. Tacrolimus is her anti-rejection medicine. It has been a bit fickle trying to keep it in the optimally therapeutic range. She is on 4.5 mg in the AM and 4 mg in the PM. It was reduced because at 4.5 mg each time it kept going over 15 which is the maximum therapeutic value.

On Saturday she painted, played video games, board games and hung out with a group of children who are here for treatment and their siblings who were visiting. She was out of her room all day. Her nurse would stop in here and scan her meds and then hunt her down to give it to her. She would stop in to use the bathroom, give me a hug and check vitals. Then, she’d be gone again. After months of being immune-compromised at home and not allowed to participate in activities with friends, I am happy to see her with other children. It will be great to have Cait and Sinéad here soon.

I knitted a lot, listened to an audiobook and actually did a little midwifery work for the first time since I am here.  I think I will have the transplant blanket knitted so that I am caught up today.  Then, I will just do a block a day and work on some other projects, mostly non-knitting, while here.  The contrast to home life is often hard to deal with for me.  There I struggle to find time.  Here, I have too much of it.  So I made a list of things to do and will start working through them to make good use of my time.

We watched just one episode of the Baking show and are anxious for the season 2 finale tomorrow. With Naomi’s potassium levels staying within normal range, we were able to enjoy some Thin Mints and chocolate chip cookies while watching.