Nina vs RSV

This was one crazy chunk of time, so much so that it is hard to put into words for me. It was also crazy busy because I was doing a lot of work and things around the house while Melissa stayed at the hospital. She also found the energy to keep a “Care Page” updated throughout her stay with Nina at the Devos Children’s Hospital. Which is awesome, I’m very thankful she did this.

Here are some pictures of Nina’s 12 (I think it was 12….) day hospital stay…

February 14th, 2010 – Can you hear that? That’s the sound of hearts breaking… See this image larger.

…and a whole bunch of people praying. Thank you all for being with us.See this image larger.

Does she look like a fighter? Well, she is. See this image larger.

While I’ll say that a lot of people end up a little disappointed on Valentine’s Day, I can pretty much guarantee you that yours should get better from here on out, little one. See this image larger.

Feburary 19th 2010 — Grandma Marcia and Grampa Dave swoop in to save our sanity yet again. As you can see, by this time Nina was also on oxygen. See this image larger.

Pretty much every night, Ian, Melissa and I ate together in the hospital cafeteria. It was one of those times when you realize that this is simply the best you can do to keep the family together. It was also one of those times when you say “Hey why don’t we eat here more often?” They had a killer salad bar. Two bucks and change for an apple juice seemed a little expensive, but whatever… the important part was it worked. We had our family moment every night. See this image larger.

With a mask on, Ian could visit Nina. Our daycare was brilliant about letting us send Ian in extra days, which was very helpful — but he was also being exposed to new germs… so the mask was a necessity. See this image larger.

Speaking of daycare, I saw this in the hallway and thought it was a great shot. This was above Ian’s boots so everybody would know whose were whose. See this image larger.

Grampa Dave enjoys holding Nina, and we weren’t shy about letting him, although probably as not as much as he’d wanted to… I kept him busy helping me move stuff from our house to a storage facility. What, you don’t think we have time to sell our house on top of all this other stuff going on? Sure, why not? (All kidding aside, if I had had time to focus on anything I was going to break down… I ended up overloading myself on purpose so that I couldn’t focus on any one thing. It worked great, but so much happened that I’ve forgotten a lot of things. So if you helped us during this time of need and I forgot to say thank you, I blame it on this. And thank you. 🙂 ) See this image larger.

February 21st 2010 – I love my beautiful, beautiful family — including the little girl in the bed back there. See this image larger.

Of all the pictures we have of her, this one hurts me the most, and I’m not sure why. Part of it is the framing, and the cold hospital surroundings… and she looks small, and hooked up to far too many things. I think it might also just be that it is a daughter in her father’s arms, as normal a photo as can be — but the situation is so far away from normal. See this image larger.

What follows is everything Melissa wrote on the Care Page that I moved over here to the blog. If you kept up with her Care Page, it is going to be the exact same stuff over again. If you didn’t well, here’s all of it in one handy page. (If you’re wondering why I would do such a thing, this text is kept in a database and can be searched. It’ll be nice to be able to reference later in a search-able way.) Just click on the link below to open it up.

February 13 & 14, 2010
Posted Feb 16, 2010 2:05am

On February 13 (Saturday), Nina woke up coughing and with a mild fever. Big brother Ian had been sick for five days prior, so it wasn’t surprising that Nina caught his cold. Late Saturday night, when getting ready for a feeding, Nina felt very warm and a temperature check confirmed that she was 100.6, high enough to warrant going to the emergency department. We arrived to the ED at 3 a.m. Sunday 2/14 (Valentine’s Day). An IV line was suggested in order to draw blood and administer fluids/meds if needed. The ED nurse tried placing the line in one hand, but quickly realized he wasn’t going to be able to get it in. He didn’t want to make Nina suffer through multiple pokes, so called in the NICU nurses, who tried both hands and one foot without success. They finally suggested trying to place the IV in a prominent vein in her head, which went in very quickly. Blood work was done and chest x-rays taken. All came back normal/clear, but a respiratory infection was suspected. Nina was admitted to the general peds floor at 6 a.m. to monitor her, especially due to the underlying heart issues.

Early morning checks on Sunday (2/14) all seemed good and there was mention that she might be able to go home late Sunday evening or Monday morning. An IV drip (saline solution plus potassium) was started at 7:45 a.m. to keep the IV line open (in the scalp IV). At 9:30 a.m. a RSV nose culture was taken, since one was not done in the ED. Results came back positive for RSV late Sunday evening.

Around 8:30 Sunday evening, Nina started having episodes of apnea (“forgetting” to breathe and then panting to recover). She would stop breathing/hold her breath for up to 10 seconds at a time. The nurse or I would shake her to get her to take her next breath. The physician was paged and he consulted with the senior attending physician, who decided we should try a breathing treatment. The respiratory therapist gave an epinephrine breathing treatment at 9:30 p.m. using a nebulizer. The treatment worked even better than the respiratory therapist thought it would, saying her lungs sounded much clearer than before.

The resident physician came in to listen to Nina’s lungs at 10 p.m. Her lungs sounded clearer to him as well, but because her oxygen numbers on the monitor were staying consistently lower (in the 80s) then desired (90-100 range), it was decided to start her on oxygen through a nose tube. The oxygen level was started at 0.3 liters. A bubbler was added to the oxygen just after midnight to help with Nina’s congestion (almost acts like a humidifier through the nose tube). The oxygen dose was dropped to 0.1 liters overnight, since her numbers were improving.

Overall, Sunday was a day full of monitoring, waiting and wondering what RSV had in store for Nina. RSV is such a volatile virus and can get worse quickly and without warning. We are hopeful that Nina will fight this off quickly, but are realistic enough to know it could be a long journey.

Mom (Melissa) is staying at the hospital with Nina, while dad (Daran) is home tending to big brother Ian. This will remain the “plan” until something changes.

February 15, 2010
Posted Feb 16, 2010 1:01pm
Monday and Day 3 with RSV

Monday morning was thankfully uneventful. I participated in rounds and learned that we’re trying to get Nina off of oxygen as quickly as possible because of her heart issues (specifically the VSD). Both the oxygen dose and duration could affect her heart by pushing more blood and oxygen through the holes, which could result in more lung congestion or lung infections. Obviously we need to keep her on oxygen so she’s not working so hard to breathe, and to keep her levels in a healthy range, but the sooner we can get her off of it the better.

At noon during her vitals check, Nina was running a low fever so Tylenol was given. It helped a lot and Nina looked much more comfortable after that. The fever went down and she nursed great for two consecutive feedings in the afternoon.

Around 2:30 p.m. the attending physician came in to check Nina and listen to her lungs… all sounded good. During the check he asked about her right eye, wondering if we already had an eye doctor. He thought there may be a palsy with her eye (e.g. lazy eye) and recommended we have that checked out too. Nina certainly is keeping us on our toes and we hope there are no other health issues that surface (not sure how much more we can deal with!).

Late Monday evening/night, Nina started running higher blood pressures. Not high enough to warrant intervention/treatment, but we will have to watch those numbers closely too.

I (Melissa) continue to hang out at the hospital and track all the procedures/progress in my handy notebook. Several members of the care team have commented on how nice it is that I keep a record and have occasionally asked me for data so they didn’t have to look it up in the computer. Guess it’s good that I’m making their job easier! Daran continues to be brilliant with caring for Ian and calling to let me talk with them both on the phone. I miss my little guy so much, but it’s great to hear the “I love you’s” over the phone. I even read Ian a bedtime story over the phone… one that I had memorized. Daran held up the book and turned the pages as I recited it to Ian. It at least made me feel like I could participate in the bed time rituals a little bit. Will probably have Ian and Daran come up to the hospital tomorrow (Tuesday) night for a little while so I can see Ian. We won’t let him in Nina’s room again (mostly because he’s back at daycare and we don’t need any other germs/viruses to further complicate things), but I’ll wander the halls with him for a little while.

A verse that has been staying with me and getting me through tough times is Jeremiah 29:11 (see below). I came across this in early January, right after learning about all of Nina’s heart issues, in the devotional book “Jesus Calling.” This book was recommended by a good friend last year, when her little boy was in the hospital with RSV. I’ve been reading it ever since and it has been such a blessing. Glad to have it with me now that we are going through a similar journey with Nina’s RSV. God is so clever in how he “prepares the way” for us.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” -Jeremiah 29:11
I think this will be Nina’s verse for a good long time. I have to hang on to the promise of “hope and a future.” She’s so tiny and young… I just pray she has a good LONG future ahead of her.

Please keep all of us in your prayers and I’ll keep you updated when I get time to add info on this CarePage. Thanks in advance for all your love and support.

February 16, 2010
Posted Feb 17, 2010 1:20am
Tuesday–Day 4 with RSV

Well my notebook is very full with notes from today, but overall this was a very uneventful day. The biggest update is that Nina went almost 22 hours without feeding (7:30 p.m. Monday night to 5:15 p.m. Tuesday night). She was just so tired/sleepy and not at all interesting in nursing or taking a bottle (which we did try a couple times). She finally nursed again at 5:15 p.m, which was such a relief. Sadly, she hasn’t eaten again since then (midnight now).

Nina has been on a very low dose, continuous drip IV since she was admitted, so she’s still getting “all” the fluids she needs. However, as a nursing mom, I would really like her to eat! I’m encouraged that she did latch on so quickly/easily tonight, even when she’s not feeling great. I would appreciate specific prayers for her feeding, and for our ability to continue breastfeeding through the hospitalization and after.

We’ve given Nina Tylenol a few times today to help ease some of the pain/discomfort from her coughing so much. You can see her wince when coughing, and the nurses can tell that her nasal passages are getting swollen from all the suctioning. Poor little girl… I’m thankful she won’t remember this.

Blood pressures have been fluctuating today… some high and some in the normal range. Temp has been in normal range most of the day. Oxygen levels have been good all day (in low to mid 90s). Her oxygen dose has been at 0.12 or 0.08 liters all day. No breathing treatments today, and the attending physician says we should hold off on further breathing treatments if at all possible.

So not much else to report on Nina’s status. We will continue in the “wait and see” mode for now. I’m guessing we’ll remain in the hospital for a couple more days, but it’s impossible to predict when she might turn the corner and get strong enough to take off the oxygen and start eating well again. Stay tuned for more updates.

On a very happy note, Daran and Ian joined me at the hospital for dinner tonight. They came straight from daycare (we sent Ian an extra day this week, since I’m not home to watch him) and we went down to the cafeteria (Prisms) for a lovely dinner. It was so wonderful to see them again and be able to hug and kiss Ian and listen to all the stories he has to tell. It was also so nice to have a few minutes of face-to-face time with my husband to catch up on his day and how’s he’s doing. I really miss being at home with the boys, but I feel my place needs to be here with Nina. Even though we’re not “doing” much for Nina, I like to be present for the updates and to be as involved as possible with treatment decisions.

Prayer Requests
Nina: better feeding/eating; to clear the fluid/mucus from her lungs; relief from the painful coughing and uncomfortable suctioning of nose and mouth; overall prayers for health and healing… for RSV and her heart issues

Ian: that he would continue to deal with this situation as well as he has; that he would know in his head and heart that mommy (and daddy) love him so much and that mommy misses him greatly; that he wouldn’t be scared by Nina being sick and in the hospital; for him to stay healthy, now that he has gotten over his cold from last week

Daran: for peace and reassurance that everything will be okay; for the ability to focus on work during the day to meet an important upcoming deadline; for extra patience/perseverance in being the sole care-giver for Ian while I’m at the hospital; for good health, as he’s been getting cold symptoms too
Melissa: for continued peace and reassurance that everything will be okay; for sleep (it’s hard to not want to stay awake and “watch” her all night); for wisdom in knowing what symptoms are important to “flag” to the care team to get Nina the best care possible; for continued success with nursing and/or pumping to maintain a good milk supply

Thanks to everyone for the wonderful support and all the prayers that have already been lifted (they have been felt). And thanks for the messages that have been left on the CarePage already. Daran and I really appreciate all the encouragement and love.
Thinking about each of you often and wishing for good health for everyone.

February 17, 2010–part 1
Posted Feb 17, 2010 2:38pm
Wednesday–Day 5 with RSV

It’s 2 p.m. on Wednesday, so I thought I’d do a “part one” entry for the day. Nina did okay overnight… slept well, but needed her oxygen level adjusted a couple of times. She also got fussy/uncomfortable around 4 a.m., so more Tylenol was given. I slept from 2 a.m. until almost 8 a.m. so that was very nice. Nina looked very pale to me when I woke up, but seemed to perk up a little around 9 a.m. Her vitals were good this morning… no fever, normal blood pressure, and heart rate, breathing rate and oxygen levels were all in the good range. She also “gained” a little weight from the check yesterday… but I’m guessing that is mostly from the extra IV fluid she was given last night. Regardless, I’m glad she’s not continuing to lose more weight.

A resident and medical student came in to check Nina around 9 a.m. Nothing to report from their check, but Nina was very awake and alert after they left. I picked her up to just hold her for awhile… which I haven’t been doing much of lately, since she’s so sleepy… and she started doing a lot of mouthing motions. I couldn’t tell if it was just due to her being uncomfortable from all the coughing or if she was showing signs of being hungry. Since her vitals were so good I decided that we’d try and nurse just to see what would happen. She did latch on and nursed for 15 minutes! This was such a relief, since she hadn’t eaten since 5 p.m. the night before. We’ve got to get her eating more before she can go home, and it’s so good for me mentally to know that she’s getting some nutrients and is still interested in breastfeeding.

During rounds it was suggested (by the attending) that we try a series of 4 breathing treatments over the next 24 hours to help open up her airway more and break up the mucus in her lungs. The physician warned me that these treatments may help a lot or may do nothing at all. That seems to be the case with most “treatments” for RSV!

Nina has been sleeping comfortably since rounds and only wakes up briefly when the nurses or techs come in to check on her. We haven’t had any alarms* going off since 10 a.m., so it’s been very quiet and peaceful in her room. (*The alarms are from the machine that monitors her heart rate, breaths per minute and oxygen levels. Nina’s oxygen level should be in the low 90s, based on her heart condition, so if she drops down into the mid to low 80s or lower the alarm goes off. The alarms would also go off if her heart rate or breathing were out of the normal range.) During our stay the alarms have gone off regularly/frequently, so this “quiet” period is a nice change.

Our pastor stopped by around lunch time for a quick visit. It was very nice to see him and hear about all the prayer support from our church family. After that I also received a visit from one of Spectrum Health’s social workers… just checking in since we’ve been in the hospital for several days. We had a wonderful conversation and even discussed health insurance, since she’s on the same type of HSA plan that our company just switched to. I learned a lot from her and was reassured that this new plan is a good one. (RMD folks: I’ll be sure to pass along the info from her experience, since it really did sound better than what several of us have been experiencing so far. Nice to hear some good insurance news for a change!)

So, overall I’m still doing well and enjoying all the messages that are being left on the carepage… thank you! Looking forward to seeing Daran and Ian again tonight for dinner at the hospital and catching up on how their days have been.

Look for a part 2 update about today later tonight. Thinking of you all often, and thanking God for having such a wonderful support network. Have a great afternoon!

February 17, 2010–part 2
Posted Feb 18, 2010 1:56am
Wednesday–Day 5 with RSV (part 2)

It’s now just after midnight, so I wanted to update you all on how the rest of Wednesday went for Nina. Sadly, the “quietness” of the morning with no alarms going off didn’t last for the rest of the day.

Just after 3 p.m. Nina was given the first breathing treatment in a planned series of four. This is really two different medicines given by nebulizer and taking about 8 minutes each to administer. Nina was fully awake during the treatment, but didn’t really like the vapors being blown in her face. At one point she fully covered her face with her arm, almost as if she was trying to block of the paparazzi. It was pretty cute, but not really helpful for the treatment. The respiratory therapist had to hold her arm down for a little while after that. The treatment seemed to work okay, as the therapist could hear a little improvement in Nina’s lungs. There was still crackling noises present, so no huge improvements made. Vitals were taken pretty soon after the treatment and Nina’s blood pressure was high again. Seems to be flip-flopping between high and completely normal every other check.

Just after 5 p.m. Nina was alert, and since she hadn’t eaten since 9 this morning I tried to nurse her again. She would not latch on and was starting to get fussy so we stopped. Her respiratory numbers started to get a little high so I put her back in the crib to calm down and hopefully go back to sleep. Her numbers continued to rise and then were fluctuating all over the place. The only other time that we have had issues with her breathing rate was on Sunday night when she had a few episodes of apnea (holding her breath or “forgetting” to breathe). Since then, her breathing rate has been very consistent and in the “good” range. Even as of midnight tonight her numbers continue to fluctuate widely. The physicians have checked on her a couple of times this evening and the nurses are watching the numbers closely. They also increased her oxygen dose again to see if that would help regulate the breathing.

Also because of the breathing rate issues it was decided to do her second breathing treatment a little earlier than planned to see if that would help. The second treatment was given just before 8 p.m. This time Nina slept through almost the whole treatment, only opening her eyes for a few moments to see who was doing this to her. The treatment seemed to work about as well as the first. The respiratory therapist could hear a slight improvement, but not a whole lot. The third breathing treatment is scheduled for around 2 a.m. unless something warrants it to be given earlier again.

The physician came back in around 9 p.m. to check on Nina and said there wasn’t much change from before. They will keep a close eye on her overnight to see if her numbers keep fluctuating this much.

That’s about it for today for Nina. Please pray that Nina’s breathing rate will stabilize soon and not get any worse. Please also continue to pray for her feeding, so she can gain back some strength. I’m hoping for a good night, but knowing that it may be a long one with all the alarms going off.

Daran and Ian came up again for dinner, so I’m very thankful that I got to see them for a little while today. Ian was talking non-stop (which he apparently did all day at daycare too and in the car on the way to the hospital). It’s pretty funny to hear the stories he comes up with and see how his little mind works. He is being such a good boy for Daran, although does have “listening” issues occasionally. Daran told me that Ian fell asleep in the car on the way home from the hospital and stayed asleep when Daran carried him inside. Guess all that talking wore him out! Please continue to pray for Ian and Daran, as they deal with the stress of the situation and the extra burden of not being here with Nina. Daran is doing such an awesome job of taking care of Ian and keeping a normal routine going for him. I’m so thankful for having such a fantastic husband.

One final note. I am trying my best to update the “quick status” section of the CarePage (found at the top of the landing page) several times throughout the day. This is a sentence or two on how Nina is doing at that particular time. No alert messages are sent out when I update that section, but if you are checking the page often you’ll find more timely info than waiting for my “full” updates to post. Just wanted to let you know, as this may be helpful for those grandparents who are anxiously waiting for the next update.

February 18, 2010
Posted Feb 19, 2010 1:31am
Thursday–Day 6 with RSV

While we are still at the hospital, a bright and sunny day outside certainly helped both Nina and I to have a pretty good day inside. It was so nice to wake up to the beautiful sunshine, especially since we both got very little sleep overnight, and it was even better to wake up seeing Nina looking better. Her color was better than yesterday morning and she just seemed to be a little bit more aware.

The most significant change for today was that Nina started eating again! She nursed a total of five times between 8 a.m. and 10 p.m. Some feedings were better/longer than others, but eating the frequently hasn’t happened since Sunday (the day she was admitted to the hospital). That alone is huge progress, so I just hope she can keep it up!

The thing that we’re still working on is getting her weaned off of the extra oxygen. The dose of oxygen given keeps gong up and down and sometimes without a noticeable reason for why her numbers are fluctuating and warranting the change. She certainly likes to keep us all guessing.

Nina had several breathing treatments overnight and throughout the day today. They seem to be helping to break up the mucus in her lungs and allow her to cough easier, which also helps get the gunk out. A chest x-ray was also taken this morning (via a portable unit brought into her room). The results came back mid-afternoon and showed no signs of pneumonia (yeah!), but that her upper right lobe is very blocked. The physician ordered a third drug to be added to the breathing treatment mix, as well as starting “physiotherapy,” which he described to me as manual pounding on Nina’s chest. These new treatments will further help break up the mucus and get it out of her system.

A nurse practitioner from the cardiology office also came in to review Nina this afternoon. Although they aren’t concerned that the RSV will negatively affect her heart conditions, they did order an echocardiogram (ultrasound of the heart), since Nina was scheduled for one in a couple weeks anyway. The echo was done mid afternoon (in room), but the cardiologist did not come in before the end of the day to review the results with us. Looking forward to talking with him tomorrow to see if there have been any changes from the last echo, which was done when Nina was only 5 days old.

Okay, going to stop here as Nina is being uncooperative again and her numbers are jumping. This is becoming a pattern with her around midnight every night… keeping me up until 2-3 a.m. hoping things will stabilize. She’s not in any real “danger,” it’s just hard to sleep knowing that things aren’t as good as they were during the day and because the alarms keep going off. Please continue to pray for Nina and the rest of our family. More updates tomorrow.

February 19, 2010
Posted Feb 19, 2010 12:08pm
Friday–Day 7 with RSV (noon update)

Another bright, sunny day! Nina seems to like the sun, as she continues to improve. Overnight was rough again, alarms sounding all the time and having to increase oxygen, but this morning she’s much better. Guess she just likes to make sure mom (and everyone else) doesn’t forget about her overnight.

Had a big breathing treatment this morning with three different drugs, plus doing some chest physiotherapy (like forceful burping of a baby). She was pretty miserable during the treatment (crying, coughing a lot, and oxygen had to be increased again), but the treatment helped quite a bit and she was much better after. I nursed her pretty quick after the treatment, which made everything better. She fell asleep and is resting comfortably.

Nina nursed 5 times total yesterday and has eaten 3 times already today (as of noon). She was given her first bottle at 6 a.m. and took 4 ounces. The nurse didn’t want to wake me up since I had not fallen asleep until 4 a.m., so I’m thankful for that. I’m also thankful that at least this once Nina didn’t have a problem going back and forth from bottle to nursing. Let’s hope that continues!

Treatment plan for today is pretty much the same as yesterday. The attending physician is very encouraged with how much better she looks today and that she’s eating so well. We are all thinking she’s made a turn for the better and just needs more time to “fully” recover before she can go home. Please pray that there is no backsliding or getting worse, as I know RSV can sometimes be a real stinker and give you false hope of recovery.

Daran and Ian are doing well and it was great to see them again last night for dinner. I am really missing them both so much and look forward to spending much more time with them when we get home. Daran called me at Ian’s bedtime last night to have me sing a song to Ian over the phone, which was great. And it sounds like Ian went right to bed after that and slept all night… such a blessing for Daran. And I know Daran is getting more sleep too with Nina out of the house… we’re still in the newborn stage where she’s up a lot during the night, so I’m glad he’s having a chance to “recover” and get some more rest. Hoping my turn is coming up soon, but I’m so thankful to be able to nurse her that I’ll deal with a little lack of sleep.

Hoping for a really good Friday and for some news of when we might be able to go home. Thanks to everyone for the thoughts, prayers and messages… it really helps me to get through the long days and nights. I love reading all the messages and knowing that we’re not alone in this journey. Thank you!

February 19, 2010–part 2
Posted Feb 20, 2010 1:28am
Friday–Day 7 with RSV, part two

It’s just after midnight Friday night/Saturday morning and here is the update from Friday afternoon and evening.
Friday afternoon was pretty good. We had a good/productive breathing treatment at 3 p.m. and got lots of the gunk out. Nina wasn’t very happy during the treatment, but it did help. The breathing treatment in the evening (9 p.m.) was much easier for her, and she slept through most of it. Then just before midnight tonight, our nurse Katie thought she heard wheezing. Katie called in the respiratory therapist for an extra check, even though the next breathing treatment wasn’t scheduled until 3 a.m. The therapist didn’t hear wheezing, but did hear a lot of congestion so did some more deep suctioning on Nina. Nina really hates this, but again, it helps to clear out the mucus so well and she’s breathes so much easier after. The respiratory therapist will be back at 3 a.m. for the scheduled treatment and will do more deep suctioning then. (Hoping I’m asleep so I don’t hear Nina in so much pain, but we’ll see.)

The attending physician (who is absolutely wonderful) came by this afternoon and asked if I wanted to see Nina’s chest x-rays. We went to a viewing station and looked at the x-ray she had in the ED (emergency department) on Sunday morning before being admitted and the one that was taken yesterday. It was very obvious how much her upper right lobe was clogged with mucus on the x-ray from yesterday. That is what all the breathing treatments and chest physiotherapy are working to break up. I am just so happy that all the physicians, nurses, techs, etc. are keeping me involved and don’t mind sharing information and educating me on what’s going on. It’s so helpful.

Another compliment goes out to the med student who has been working with Nina all week. I asked him yesterday to further explain what an AV Canal meant, in regards to Nina’s heart. He had some general info top of mind, but didn’t want to misinform me, so he took it upon himself to do extra “homework” and come back with an explanation that I could understand. He kept his promise and came back this afternoon with diagrams and handouts, and spent 15-20 minutes with me to review the information and answer my questions. I’m really impressed with several people here who continue to go about and beyond, and follow through on their promises (not the case for everyone).

On the family/friend side, grandpa Dave and grandma Marcia came up today for a visit. We spent some time together this afternoon in the hospital room just catching up and taking turns holding Nina. It was so nice to have visitors. I also had one of my favorite clients stop by for a visit… thank you, CJ!… but sadly we didn’t have a lot of time to talk as the room was very busy when she was here. Hoping we’ll get to connect again soon. Daran and Ian also came up to the hospital for dinner… our new normal routine… and then for a change I took Ian (and Marcia) home to tuck Ian into bed, while Daran and grandpa Dave stayed with Nina. I was planning just a quick trip home to “re-supply” and to spend a little time reading and singing to Ian at bedtime. However, Ian fell asleep in the car on the way home… no nap again today at daycare, so he was tired… and he stayed asleep through me carrying him into the house, taking off his coat and shoes, and even through a diaper change. It was still good to serve in the mom role with Ian, as it’s been too long since I’ve taken care of him. After packing a bag with supplies for the next few days, I came back to the hospital and sent Daran and David home.

Overall, Nina is making great progress, but still has several issues that need to be addressed before she can go home. It will be a few more days before we even begin to talk about when going home might be an option. Saturday (12/20) marks one full week here in the hospital.

Prayer requests:
Please pray that Nina continues to eat well, and regains the weight she has lost while being here. Pray for her lungs to clear and that God would comfort her from the pain associated with the suctioning and other treatments. Pray that we would be more successful with weaning her off of the extra oxygen, which is another big milestone before we can go home.

Please also pray for a good weekend of fun and fellowship for our family… Daran, Ian, grandma and grandpa… and that I would feel okay with taking some time away from the hospital to reconnect with Ian. It’s a big struggle for me to leave, since I want to be the best patient advocate I can be for Nina. Pray that I find the correct balance so I won’t have guilt and that Ian (and Daran) won’t feel neglected.

Thanks again to everyone for emails and messages, and for all the prayers. I definitely continue to feel blanketed in your prayers and know that God is holding each member of our family close to Him. May each of you also find the blessings that God provides to us daily.

February 20, 2010–early morning
Posted Feb 20, 2010 3:03am
Saturday–Day 8 with RSV

It is very early morning… just before 3 a.m., but Nina is doing so well that I wanted to do another quick update. She has been sleeping soundly since 1 a.m. and her numbers have been great!… very unusual from the past several nights. She also just got through another breathing treatment (she slept through it) and her lungs sounded better to the respiratory therapist after. We skipped the suctioning afterward since she is sound asleep and seems to be doing better. Mom off to sleep now! Yeah!

February 20, 2010–part 2
Posted Feb 21, 2010 12:39am
Saturday–Day 8 with RSV

Nina had a pretty good day today… somewhat uneventful. It’s amazing how much more calm and quiet it is around the hospital on the weekend. No rounds and many fewer people coming and going from the room. I must say it was kind of a nice relief this morning, as both Nina and I slept in (until 9 a.m.)!

As I mentioned in the last update, Nina did great overnight. We didn’t have to turn her oxygen up at all and she just maintained at good/normal levels. She also did well in the morning and we even tried turning off the oxygen around 11 a.m. She only lasted 10 minutes without the extra oxygen, but 10 minutes is better than no minutes, so I’ll take it! Sadly this afternoon her levels were fluctuating again, so we had to turn the oxygen back up several times. Nothing drastic, but no progress in weaning her off of it either. She’s doing well again now, so we just have to wait and give her more time to heal.

Feeding/nursing went well again today, so thanks for all the prayers in that arena! Grandpa Dave even got to feed Nina a bottle (2 ounces) while I was at home with Daran and Ian. I’m sure that was wonderful for both he and Nina, and will be a nice memory from this difficult experience.

As I just mentioned, I did venture out of the hospital again today for a couple hours. Grandpa Dave and grandma Marcia stayed at the hospital to “watch” and hold Nina. Thanks to them for relieving me, and making me more comfortable leaving knowing someone was there for Nina. It was nice to go home and play with Ian for a little bit and read him stories. I found that I was so exhausted, however, that it was really difficult to keep up with the energy level of a 3 year old. I’m so thankful that Daran has been able to be the primary caregiver for Ian this whole week, and has done such a fabulous job of keeping up a somewhat normal routine for Ian. (Thanks, sweetie!) The three of us also went out to dinner at Panera before I returned to the hospital. That was also a treat for me after eating hospital food at every meal for a week.

Nothing else significant to report. Hoping for another good night tonight and for more progress tomorrow on weaning Nina off the extra oxygen. She looks so much better and is acting more like herself, so I’m very hopeful that it won’t be too much longer now.

“Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

February 21, 2010
Posted Feb 22, 2010 12:45am
Sunday–Day 9 with RSV

Nina had a good day today. Not many changes from yesterday so not much to report. We were able to decrease her oxygen levels a couple times today so that is great news. She continues to eat well and gained a tiny bit of weight from yesterday. Her chest also sounds clearer to everyone who listens to her. We are definitely in the home stretch, just not sure how many more days it will take to wean her off the oxygen completely.

I was also told today that our cardiologist is recommending we come in for a follow-up visit three weeks after we leave the hospital. This will likely be just an office visit with EKG, since the echocardiogram was done here last week. This RSV inpatient experience has certainly helped prepare me in many ways for the long road ahead of us with regards to Nina’s heart conditions and the required open heart surgery. Not looking forward to another inpatient stay, nor watching my daughter go through a very scary surgery, but I guess we just need to focus on getting through this stay first.

It’s hard not to think about all that does lie in front of us, however, when almost every nurse, tech, therapist, etc. asks about when the heart surgery will take place (we don’t know) and if we had found out about the heart defects while I was pregnant (we did not). I know there is no sense worrying about “tomorrow,” but that is easier said than done. I just continue to trust God and thank Him for all the blessings He is giving us daily. I know He will get us through this current RSV experience and will be by our side through all of the heart journey as well.

Here’s hoping for a great Monday, and that we might start hearing more info about when we might be able to go home. I will certainly keep you all posted!
Thanks again for all the messages… they really help to get me through the days.

February 22, 2010
Posted Feb 22, 2010 10:32pm
Monday–Day 10 with RSV

Last night was a bit rough. Nina wanted to “snack” constantly then fall asleep in my arms. Every time I put her down in the crib she’d start crying again and kicking her legs, which makes the alarms go off because the wire is not picking up the signal correctly. This cycle happened from about 10 p.m. until 2 a.m. I also wasn’t feeling very well… stomach ache… so that just compounded the difficulty of the situation. I really wasn’t sure if I could take much more, but then she fell asleep soundly and didn’t wake up except for nighttime feedings. Once morning hit we were back in the normal swing of things.

My stomach ache did continue for most of the day, so Nina and I napped as much as possible in the morning and early afternoon. It was probably God’s way of telling me to take better care of myself, since I’ve only been getting 3-4 hours of sleep a night since we got here. I definitely feel a whole lot better tonight and was very happy to get the extra rest.

Nina is doing a little bit better every day, but the progress is very slow. Today’s big milestone was the removal of the IV drip. She’s getting enough fluid now since she’s back up to a normal level of eating/nursing, so the IV drip is no longer necessary. They did leave the IV port in her head and closed it off, just in case we need the IV line for anything else in the future. That way they won’t have to poke her again to place another IV. I’m very happy with this progress and thankful that we have one less wire/tube to navigate around when holding her.

Nina’s oxygen level stayed mostly the same all day. We did turn the level down once, which lasted for several hours, but then had to turn her back up twice since then. It’s like the old saying, “two steps forward, one step back.” I continue to be hopeful every day that the oxygen weaning will improve, but it’s very slow going at this point. The doctor doesn’t want to push her, as only time will tell how her body is adapting to fighting off the virus.

Daran and Ian came up again for dinner and we all had a lot of fun together. Ian was in a pretty good mood, which was nice considering he was up a lot last night for Daran, wasn’t happy about going to daycare this morning and didn’t take a nap while at school. After a rough start to the day for both Daran and Ian, it’s nice that the rest of the day improved. Ian is being such a trooper through this whole thing, but we can tell he’s getting pretty sick of mom being gone and gets a little more frustrated every day. Please keep Ian in your prayers, especially for extra patience and understanding. We know he’ll get through this like the rest of us… kids are so resilient… but it’s no fun to think you’re second fiddle. Please also continue to pray for Daran and all the challenges that come from serving as a single dad to a 3-year old, while also worrying about Nina and not being able to spend much time with her.

Prayers for Nina continue to be that we can wean her off the extra oxygen, for her lungs to continue to clear and heal, for feedings to continue at their normal level, and for overall health so as not to put any additional burden on her heart. Prayers for me include health, sleep and patience, as the wait for her to get better is very draining.
Blessings to all of you. And for those up north please stay safe in this lovely winter weather.

Cat very sick now too
Feb 23

Daran called me at 7:30 a.m. to tell me the cat is very sick. We are taking him into the doctor this morning for evaluation, but it’s not looking good. I’m heading home now to help with the situation. Nina is doing well at the hospital and I’ll be back as soon as possible to check on her.
Please pray for our family. This is all getting just too much to bear. Thanks.

Going home tomorrow!?
Feb 24

Nina had a great day today. She was taken off oxygen at noon and has stayed off of it all day. Barring any set-backs tonight, we will be going home tomorrow morning! Praise God for this blessing and for getting us through this difficult week. Thanks to each of you for all your prayers and support. A full update on how the day went is coming soon, but wanted to share the good news quickly.

Tuesday–Day 11 with RSV
Feb 24

What a trying and tiring day. It’s 2 a.m. now, but I wanted to provide a quick update about the day before heading off to sleep. Nina ate just a little bit ago and is now sleeping soundly again.

Daran called me at 7:30 this morning to tell me that the cat was not doing well and that we needed to take him to the hospital. After I fed Nina and made sure the nurses had a full update from my end, I headed home to help with the cat. The vet did blood work and a full urinalysis and found potential problems with his liver and kidneys. The vet recommended keeping him overnight for further observation and testing and we agreed. It doesn’t sound like he’s headed for kidney failure, but the vet did warn us that cats can sometimes be symptom-free one day and very sick the next, so anything’s possible. The vet also mentioned that his current symptoms might be pointing to a tumor. She didn’t feel any masses, but if symptoms continue we may need to do an ultrasound or other diagnostic testing to rule out the tumor. Hopefully we’ll know more after his overnight stay tonight.

Sadly, because of the ordeal with the cat and some chores around the house I needed to get done, I wasn’t able to get back to the hospital for Nina until 3 p.m. While I was gone much progress was made. The nurses decreased her oxygen 3 times, eventually taking her off of it completely. This happened around noon. Another chest x-ray was also taken while I was gone, and the results showed that her lungs are almost complete clear. Great news! Our cardiologist also stopped by while I was gone and gave Nina the okay to go home from his perspective. I was sad to miss his visit, as I have lots of questions regarding the results from our echo on Thursday and any ramifications from this illness on timing for her surgery. We’ll meet with him again in three weeks, so I guess my questions will just wait until then.

The rest of the afternoon was spent getting caught up on what happened while I was gone and nursing Nina. She was so happy to see me again that she wanted to nurse almost constantly all afternoon and evening. I can’t tell if she got better today because I finally left her alone and wasn’t “hovering” over her or if she was worried that I had left her and decided she ought to get better quick so I’d come back! Either way, it worked.

As I said before, we are likely going to be discharged in the morning unless something goes awry in the next six hours. Her oxygen levels have been great so far, so just praying that continues. I’m so ready to go home, but I also want to make sure Nina is really ready too (health-wise), so we don’t end up back here with a relapse.

Thanks again to everyone for all your prayers and support. We couldn’t have made it through this without you and without God holding us close. I also lift up a special thanks to all the physicians, nurses and staff at HDVCH for providing exceptional care to our daughter Nina for over 10 days. I have a special place in my heart now for all these wonderful people.

And with that I say Good Night.

Feb. 28, 2010–Home and Healthy
Posted 8 hours ago

Sorry for the delay in writing an update since we’ve been home. Nina and I spent the last several days sleeping almost all day long. It is exhausting being in the hospital and both of us needed time to catch up! Nina is doing great. Still a little congested and coughing occasionally, but is definitely back to her old self. She’s coo-ing and smiling more and more each day and just seems to be growing up before our eyes. Hard to believe she’s 2 months old already!

Friday we went back to the doctor for a follow up appointment. It was already scheduled as her 2 month “well child” check-up, but we just used that time slot for a general check. At the appointment Nina weighed in at 9 pounds… not too bad, especially since she lost a little weight in the hospital… and measured 21 inches long. Her lungs sounded clear and everything else was normal. Praise God! I would not let them do any of the normal 2 month immunizations, as her little body has been through too much in the last two weeks and I didn’t want to risk any other complications. We’ll go back in a couple weeks to get caught up on the shots.

Other updates. The morning we were discharged from the hospital our cardiologist did stop by for a few minutes. He said Nina’s heart was doing very well and that the RSV had not further complicated things. It sounded like there was slight improvement from the first echo to the second, but not much. Regardless, the cardiologist thought Nina’s prognosis was very good. If all stays on course, he’s anticipating that Nina will NOT need any heart medications and that her surgery will likely wait until next spring (i.e., spring 2011). Very good news! I have been very impressed with our cardiologist so far. He always takes time to thoroughly answer my questions… I have a lot!… and never gives me the impression that he is too busy for us or is rushing to get to the next patient. A very good “bed-side manner” if you will.

Our cat is also doing okay. The vet put him on a special diet and some medication, but we’re not sure either are working great. We will likely have to have additional tests done this week to further pinpoint what is going on. He seems okay, so hopefully there are no additional underlying issues that will surface.

We are all so happy to be home and together again as a family. I praise God for holding our family close during this difficult time and for healing Nina. Thanks to each of you for keeping our family in your thoughts and prayers and for continuing to check up on us. Sadly, we still have a long health journey in front of us because of Nina’s heart, but we’ll take one day at a time, just like everyone else. I will continue to use this carepage to document Nina’s progress–after routine cardiology appointments, once the surgery gets scheduled, etc. Hopefully the updates will be few and far between going forward! Blessings to you and your family, and may you all have health and joy.

“God is able to do immeasurably more than all we ask or imagine.” Ephesians 3:20

“For I am the Lord, who heals you.” Exodus 15:26

“O Lord my God, I called to you for help and you healed me.” Psalm 30:2