Homecoming Parade
There’s much to catch up on and I will attempt to make it as brief as possible but since I am a verbal processor this may be long-winded. But if you’ve been keeping up with this blog at all, you already know I can be long-winded. Where to start? First of all I cannot believe I am a Mother of two! Having Sparrow home has made it a reality now. Splitting my time between chasing my sweet Noah around the house and preparing syringes for my little girl, the true meaning of “Mother” carries a deeper significance than it ever has before. As does the word “sacrifice”. Love is sacrifice, people. If you’re married and/or have kids you know what I mean. I never knew how selfish I was until I got married. Then I got smacked in the face with how selfish I STILL was when I had Noah. Now I am surrendering everything I have to my husband, son and daughter hoping to come out a better person on the other side. This is my life. It is beautiful.
So to back track a little, I know my last post was about our sleepover at the hospital so I’ll start there. Mark and I packed up and got to the hospital around 12:30, leaving Noah with a sitter all day and then having his Uncle Joseph and Aunt Caitlyn come spend the night with him that night. Noah has been struggling with some serious separation anxiety these past few weeks, and can you blame the poor kid? I’m sure he’s so confused as to why Mommy and Daddy keep leaving him with various people and then not returning for a day or two. It’s tough being 19 months old and not being able to understand what a “Baby Sister” is and why Mommy is always leaving to go see her. But he’s adjusting; or at least I hope he is. So the 24 hour sleepover was good. We had Sparrow’s favorite nurse, Melody during the day and she had prepared a lot of paperwork and information to help us get ready to take Sparrow home! Melody was Sparrow’s nurse right after surgery and has been one of the main nurses for her over the past few weeks. We really love her and are thankful for her tenderness, and how she loves on Sparrow while she’s taking care of her. The afternoon went well and Melody went over the most important things to remember with Sparrow. The NG tube, feeds, fortifying the breast milk with extra calories, bathing, incision care, oxygen saturation levels, giving Sparrow her meds, checking her heart rate and weighing her daily. We were given a binder where we record all of this information daily and then bring the binder with us to any and all doctor’s visits. I really like documenting and recording information. I know it sounds dorky, I guess that’s the teacher in me – but I really do. I like being organized and making lists and having all my ducks in a row. Especially with my girl girl. I don’t want to miss a beat with her. The more organized we are, the better her chances of getting strong and growing healthy are. Caitlyn (who is a nurse) told me the other day that I have so much attention to detail that I could be a nurse if I wanted to. I choked back my laughter and received the compliment saying “Thanks, but I NEVER want to go back to school. Me and school don’t work well together.” That afternoon, our good friend, Stephan came by with some americanos & scones for us to dine on as he cooed over how beautiful our girl was. It was so nice to catch up with him and I’m really glad he got to meet Sparrow before returning home to Florida. Room 10 on the 6th floor at Levine was equipped with the most random couch I have ever seen. It was L-shaped and Mark and I made many attempts to make it pull out until the nurse came and told us that it wasn’t a pull-out couch. -ugh- One of us would have to sleep on the little part of the L and the other on the longer part of the L. Great…..neither of us was getting any sleep – we already knew that. Mark went for a run to clear his head and get out of the hospital for awhile. I attended to my little bird and ate a bowl of cereal. My Mom and Dad showed up around 7:30 with a giant tub of movie theater buttered popcorn and some games. We didn’t end up playing any games because my parents just held Sparrow the whole time, but we did eat the popcorn. After they left Mark and I settled in for the night and realized we had been doing all of Sparrow’s care by ourselves for several hours now and we both felt very confident in ourselves and in her. The night went well except at 3:00am the night nurse somehow thought it’d be a good idea to completely undress Sparrow, weigh her and give her a bath. At 3:00 in the morning. That was my shift (Mark and I made shifts with each other for the night feedings so one could try and get some sleep while the other took care of the baby). I still have no idea why this nurse wanted to do a 3am bath, but who was I to argue? I could barely open my eyes and my legs were all rickety from sleeping on the little part of the L couch. Naturally Sparrow HATED the 3am bath; as did I and she HATED being weighed and all of this 3am nonsense disrupted her peace and her sats dropped. We removed her oxygen around midnight and hoped she’d fare through the night without it, but all of the 3am business just was too much for her – and me. So we turned her oxygen back on and she eventually went back to sleep after I filled her tummy. I curled back onto the little part of the L and tried to go back to sleep. While I lay there I thought to myself “It is definitely time to take my baby home.” Next morning was Labor Day and the bright sun shone into our room way too early. I started warming Sparrow’s next feed then left to get Mark and I some high octane coffee. The hospital Starbucks was closed (bummer) but luckily the cafeteria had some Cafe’ Verona that I filled our cups with. When I returned Mark was still asleep but our angel nurse, Melody was back on shift! YAY! I told her about the 3am bath and the dropping sats and she thought it was strange too that the nurse wanted to do all that at 3am while we were there. She said usually the nurses change their schedules to accommodate the families sleeping over. Apparently this particular nurse did not get the memo. I let it go and realized it’s probably better for Sparrow to come home with the oxygen. It’s better to be safe than sorry. Oxygen levels are not something to mess with. The doctors made their rounds that morning and confirmed that we would indeed be taking Sparrow home on Tuesday! She would come home with oxygen and the NG tube for feeds. We had been formally trained in giving her meds, feeding her, bathing her, weighing her, checking oxygen saturation levels and so on and so on. It was time to bring her home. That night my family came over for a little Labor Day cook-out. After eating traditional cook-out foods, we ended up playing in the front yard with friends and watched all the little boys run around with frisbees, toy cars and balls. While I sat in the driveway with my sisters I had a sudden moment of feeling like someone was missing. Sparrow. It was the first time I really felt like she needed to be with us. Like our family really was incomplete without her. Then I got so excited thinking of her coming home the very next day! Tuesday was a bit of blur. I felt so prepared and so unprepared. I was super excited but also wanted to be level-headed in case the doctors had changed their minds and didn’t think she was ready to come home. Noah’s sitter showed up around 9:00 and I left to pick up some last minute things for Sparrow’s homecoming and Mark went to work for a little while at a coffee shop. I got a call around 11:00 saying that a Healthy @ Home representative would be delivering the oxygen machine at 12 and we’d need to be there to learn how to use it. So I called Mark and relayed the info. Then I received a call from Sparrow’s nurse (another we liked a lot named Kim) and she said everything was in order for us to take Sparrow home as soon as we got finished learning the in-home oxygen machine. OMG it was happening so fast – I could barely believe it! I took notes while the oxygen machine guy explained everything to us (I didn’t want to forget anything important) and then we took off to the hospital ready to bring our girl home! Once we arrived Kim went over a giant stack of paperwork with us on what to do, what not to do, who to call when and so on. Sparrow was curled up on her side with her sweet little hand tucked under her chin – irresistible! The travel oxygen tank showed up right when we arrived and he showed us how to use it. We read and signed some papers then watched another video on newborn safety. At that point everything had been done and we were ready to go! We loaded all her belongings and a ton of hospital supplies and Mark went to get the car while Kim and I put Sparrow in her car seat! It was so exciting to me for some reason thinking of my little bird being outside for the first time in her life! She really enjoyed the car ride and we were greeted at home by Uncle Joseph and a very unsuspecting Noah Fox. It was a little frantic at first setting up Sparrow’s hospital bed in our room, trying to keep Noah from pushing buttons and messing with medical supplies, but after an hour or so, Sparrow was settled and we started her feed. When Noah first met her he seemed more interested in the mobile hanging over her bed than her. He didn’t even seem to notice there was a baby. he is taking more notice to her now and learning the word “gentle” and “baby sister”. Mark heard him run over to our bedroom door yesterday and call for Sugar. We like to imagine he’s calling her Sugar. Now we are two nights into her being home and we’re all doing well. It’s definitely an adjustment having two kids at home and one who needs a lot of medical attention. During our different shifts at night Mark and I sleep with our heads at the footboard (where Sparrow’s bed is) so we can hear her better. Her cry is still barely audible so it’s easier to attend to her when our heads are close. The oxygen machine is pretty loud and is giving Mark some trouble sleeping, but I’m fine with it. I think I can sleep through just about anything but my kids crying. Mark, Noah and Sparrow are all napping right now as I type this. I am so content with my amazing family and thankful that it is complete. Continue to pray for Sparrow’s vocal chord to heal quickly and that she’d come off the oxygen soon. We have an appointment with her cardiologist tomorrow, and then one with her surgeon next week. Her surgeon has decided to schedule her second surgery to be in 3 months, instead of 6. He said that because she’s doing so well he might as well go ahead and do the second one sooner than later, as long as she continues to gain weight. I don’t really know if this is good or bad news, but I suppose I’ll ask him next week when we go see him. I am a little nervous about the surgery and recovery time falling on or around Christmas. We really don’t want our baby girl to be in the hospital over Christmas. We’ll see. Thanks for checking in. Here are some pictures! Love,Jessie, Mark, Noah & Sparrow
Noah & Daddy took a nature walk – here’s what Noah found
Typical…
Preparing an NG tube feed
Melody teaching me – this is my serious face. Sparrow’s giving gang signs
Breast milk via syringe
Dirty Diaper
cutie
Love this
with Pappy
Monday morning
Homecoming Day
My favorite picture!
Getting on the elevator with Kim
Strapping her in
Going HOME!!!
Lookin’ out the window
Noah meeting Sparrow for the first time
Checking her out
Aunt Caitlyn
Hanging out on the couch
First bath at home… check out how hardcore her incision is. Tough as nails, ya’ll
Mommy bath time
Daddy bath time
sleepover!
Mark and I are headed to the hospital today for a 24 hour required sleepover with Sparrow. This is protocol for heart babies to make sure that the caretakers can handle everything that is required BEFORE taking the baby home. If we have any questions or need assistance we can just walk out to the nurses desk and ask for help. Otherwise they draw the curtains and don’t come in her room unless we ask. So we are getting packed up to go stay in her room today. Of course it isn’t going to be 100% realistic because Noah can’t go with us, but at least we’ll get a good idea on how to do all the medical things for Sparrow, as well as just be her Mommy & Daddy – which I am so excited about!
Yesterday we decided to start preparing for Sparrow’s Homecoming. I have avoided setting up a lot of things too early because I didn’t want to see them lying empty for several weeks. But Mark put together the Co-Sleeper and we set it up in our room. I put soft, pink blankies in it and set up a little diaper changing station on our dresser, complete with Sparrow’s luxury wipes warmer. Next thing I know, a sneaky little Fox runs in and throws his juice box into Sparrow’s nice, clean bed. Oh boy…..we are in for it, aren’t we? Thankfully the girl is already tough as nails, let’s just hope Noah learns how to be gentle and loving. As far as Sparrow goes, she is still coming home Tuesday, and we will feed her through her nose tube. Mark and I have both been trained by the nurses on how to do this, but it still makes me nervous. We also have to check her weight everyday and take her oxygen saturation levels. Yesterday Mark, Caitlyn and I all got certified in infant CPR. Anyone who might be watching Sparrow by themselves will need to be trained. We were given a box with a dvd on infant CPR & a blow-up practice baby (who happens to be dark skinned). Mark was pretty excited we got to bring it home and said he’s always wanted a black baby! hahaha It’s pretty overwhelming bringing home any newborn, but ours is special and needs a lot of special attention; I hope we’re ready for her. People have asked me “How do you feel about feeding her through her tube? Can you do it?” and my response is always “I don’t have a choice. I have to be ok with it.” So yea…..that’s where we’re at. In three weeks we’ll bring Sparrow back to the hospital for them to check her vocal chords and do another swallow test. Hopefully at that point she will be healed and we can remove the tube and start up bottle feeds again. Pray for that healing to progress quickly. Also pray for her oxygen saturation levels. She is still wearing the oxygen and even though she’s barely on a whiff of it every time they’ve removed it her sats have dropped a little when she gets fussy and so they put it back on again. We don’t want to have to bring her home with oxygen, so please pray that she would come off it today and be strong without it until she comes home Tuesday.
Last Sunday with Aunt Tiffany – this was when Sparrow had aspirated some milk & wasn’t getting good blood oxygen levels. You can tell she looks a little grey.
Mother-Daughter
Can’t get enough
Kisses from Daddy
Almost home!
Thanks for checking in. Hopefully the next post will be her Homecoming!!! Love,M, J, N & S
up and down
Sorry it’s been awhile since my last post. Things have been busy and Sparrow has literally been up and down. Let me explain.
Sunday night Mark got a call that Sparrow was doing so well that she could be moved to the not-so-intensive-care on the 8th floor. this is where any and all children in recovery go when they’re on the mend. Sparrow’s doctor felt like she was doing well enough on a medical level to where she didn’t need to be in the cardiovascular ICU any longer. so she was moved up to the 8th floor. she was put in a big crib (that looks a bit like a cage) and was being taken care of by new nurses. these nurses have a 1 to 5 ratio, meaning one nurse cares for as many as 5 children at one time on their shift. these nurses also are NOT specialized to specifically know the needs of a heart baby. so just as Mark and i were glad that Sparrow no longer needed intensive care, we were also sad that she wouldn’t be getting as much attention. the doctor that spoke with Mark mentioned that for Sparrow’s benefit it’d be a good idea for her family to be with her as much as possible while on the 8th floor. we both still had a lot of questions, so Mark headed into the hospital that night to check out the 8th floor and see what it was like. That night after her feeding, Sparrow’s sats went down. This means that her blood oxygen saturation levels were below what they should be for a newborn. The nurse put some oxygen on her to help bring them back up to normal and Mark was there to soothe her because she hated the new tube on her nose. He stayed with her until midnight and made sure she was sleeping peacefully again and that her sats were back to normal. The next morning I woke up early, pumped, ate breakfast and headed to the hospital for a full day. When I arrived I was given the news that over the night Sparrow drank a full 2 ounces from a bottle! That’s considered a full feeding for a newborn of Sparrow’s weight. Upon further investigation by the cardiologist, we found out that Sparrow drank so much from the bottle because the nurse had missed a feeding and she had gone from 10:30pm to 4:00am without feeds. So, yea….she drank the 2 oz. from the bottle because she was starving! I was devastated and asked the cardiologist who I needed to talk to about this. She said she’d take care of it for me and tell the nurse manager and make sure it didn’t happen again. After she left I sat there and cried, seeing my baby back on oxygen and knowing she wasn’t being taken care of very well. Around 11:00 Kyra came back to work with Sparrow on her sucking and swallowing skills. I must mention here that Kyra is one of the sweetest people I have ever met. She is so gentle and caring and loving with Sparrow and with me – I don’t know how I’d be handling all of this without her help. She taught me some tricks on how to get Sparrow to take the bottle and together we watched her drink a full 2 ounces! We were both so excited and proud of Sparrow. Kyra felt confident in my feeding skills so she said I should do the next one by myself. Which I did and Sparrow took another 2 full ounces! Herein lies the problem. After each bottle feed Sparrow’s sats would drop and they would need to up her oxygen intake. Her little cry would sound wet and raspy and there started to be much concern as to what was going on in her lungs. Yesterday Sparrow had a chest X-ray that confirmed fluids in her lungs and the doctor ordered no more bottle feeds until we figure out why she has so much fluid in her lungs and why her sats keep dropping. The big assumption was that during bottle feeds she was aspirating milk. I packed her up and helped the nurse bring her back down to the 6th floor (cardiovascular ICU – again) where we were greeted by 5 eager nurses and doctors! I was thankful for all the attention again. Ever since moving to the 8th floor I felt like Sparrow’s progress took a step backward and that it had something to do with the lack of attention. So back in the hands of the cardiologists, the doctor ordered a few tests to be done to determine why she had aspirated some milk. First assumption was that Sparrow may have reflux and that after a feed she may regurgitate some milk and aspirate it. So she went and had a test done where they can determine if she has reflux or not. The second assumption was that she may have a paralyzed vocal chord. This is common in heart babies because the nerve that controls the vocal chords is very near the surgery site and can be damaged during surgery. Sparrow makes little to no sound when she cries, so this prediction seemed likely. If a vocal chord is paralyzed it can leave a small gap open in the wind pipe that causes aspiration of food. Mark came last night to find out the results of both tests and what he was told was disheartening. Sparrow does indeed have a paralyzed vocal chord and it may take up to 6 weeks for it to heal. Because of this problem she is not allowed to have bottle feeds for 6 weeks. Because this is her only issue, the doctors still want to send her home, but she will require tube feeds; to be administered by Mark and myself. There was also talk of what kind of tube she would be getting. Currently she has the one through her nose called an NG tube. But the nurse practitioner told Mark last night that Sparrow may need a stomach tube, which has to be surgically placed. Mark called and told me all of this information and I just cried. We were making such a great progress with the bottle and her heart is really doing quite well. The only thing I have prayed over and over is that nothing else would go wrong. So I felt immense disappointment last night. Especially at the thought of a stomach tube being surgically placed for her feeds. I have never known what to expect in this whole journey, but last night felt like a blow to my head and all I could mutter was “this sucks” over and over again. Bless the Lord that my sister-in-law, Caitlyn was with me because her gentle hand-holding and comfort brought me back around again. Because Caitlyn is a nurse she described the stomach tube to me and made it sound less horrible than what I was imagining. Of course there’s crazy risk in Sparrow having another surgical procedure, so I REALLY was hoping they’d just let her keep the nose tube. Mark explained that Dr. Peeler would make the call in the morning when he does rounds and we’d find out his conclusions when I came in. After Mark reluctantly set-up a musical mobile onto Sparrow’s crib he left the hospital to have beers with his brother. We both are feeling the weight of everything now and our bodies and mind’s are exhausted. We haven’t seen each other in days and barely are remembering to eat. Mark didn’t like setting up the mobile because it wasn’t on her bed at home – where she should be. As her Daddy he just wants to fix her and bring her home. Who can blame him? I woke up at 6 this morning, needing to pump but I just lay in bed thinking. I drifted back in and out of sleep fantasizing being in the Caribbean, laying on an abandoned beach, sinking into the warm sand letting all my worries drift away into oblivion. Somewhere in the fantasy I fell sleep and dreamt about swimming with a sea turtle. When I finally did wake up Mark and I enjoyed a nice cup of coffee together on the couch. He brought up that we need to plan a vacation. I smiled. The two surely have become one. Either that or Mark secretly has ESP : ) I told him of my little Caribbean daydream and we laughed. But then we seriously decided we needed something to look forward to. So we agreed that in 2-4 months we are going to take a trip to the Caribbean – or somewhere tropical where we can relax and do absolutely nothing. It’s something to look forward to while the days all seem to blend together right now and I don’t know when I’ve slept or eaten or laughed. I arrived at the hospital around 10:00 (because I had slept in) and here’s what I was told. 1) Sparrow would NOT be getting the stomach tube. The risk of another surgery on her little body was too great and Dr. Peeler thought the nose tube would suffice for her feedings until the vocal chord is healed. 2) A morning chest X-ray confirmed that her lungs were already clear of the aspirated milk from yesterday! OMG! This was huge because if that milk stayed in there and bacteria formed Sparrow may have gotten pneumonia, and that would make her hospital stay MUCH longer. 3) The goal now is for Sparrow to come home next Tuesday – September 7th! As of today she will be coming home with the nose tube and Mark and I will learn how to place one, how to pull one out and how to feed her through it. Because of the paralyzed vocal chord she’s not allowed to have any feeds by mouth until that chord heals and she can swallow safely without aspiration. 4) Her sats are still a little low when she gets irritated (with diaper changes, when blood is being taken, and when changing her clothes, etc…) so she’s still on her oxygen. But the sats should improve over the next couple days because now she no longer has milk in her lungs. 5) Dr. Peeler does not want her moved back to the 8th floor again. She will stay in cardiovascular ICU on the 6th floor until she comes home. 6) I was given a giant binder filled with all the information Mark and I must learn before Sparrow can come home. We have to watch several dvd’s, read a bunch of paperwork and get infant CPR certified all before next Tuesday. Wow. I realized that my house is somehow going to have to morph into a mini-hospital for Sparrow. Oh boy…. So most of the news I got this morning was good. Unexpected, but good. Sparrow looks great today and is acting like a real baby who needs more stimulation than a hospital room can give her. She LOVES the mobile Mark put up and was cooing at me – as much as her one working little vocal chord could. I had some education while I was there and was taught how to put the feeding tube in, check for placement and then feed her through it. It was scary and made me nervous, but an X-ray confirmed that after my first try I had placed the tube in the right place – in her stomach. Hopefully I won’t have to replace one once she comes home, because we don’t have any x-ray machines lying around here to confirm placement. -ugh- And so we’re taking it all a day at a time. Mark called while I was at the hospital and said he’d made us an appointment for a couple’s massage this Saturday. That makes me happy. We both need some relaxation and pampering. It’s not the Caribbean…..yet. : ) Mark also has a show Saturday night at The Visulite – which will be good for us to get out of the house (& hospital) and do something fun. Mark goes on at 8:45, in case you can make it. http://www.visulite.com/ Much love and keep on praying. It would be a total miracle if her vocal chord was healed before Tuesday and she got to come home WITHOUT the nose tube. I don’t know what else to do except pray.
This was last night. She LOVES to be swaddled. xoxo
suckling
So yesterday Mark and I decided to take some authority with the whole oral stimulation issue with Sparrow – I mean we are her parents after all. We both had felt like the nurses were trying the bottle & pacifier minimally throughout the day and that Sparrow was becoming more accustomed to getting her feedings through a tube instead of learning that when she sucks on a bottle she gets her tummy filled. So we called the nurse practitioner in charge and requested that BEFORE each tubal feeding (when she is hungry) that the bottle be used to try and get her to latch on. We even went further to say that 2 -3 of her feedings be done by Mark or myself. The NP agreed and made note of our demands on Sparrow’s chart and informed her nurse yesterday.
I showed up around 12:00 and had a little talk with the nurse. I was feeling authoritative after a chat with a good friend who strongly encouraged me to try and bring Sparrow to breast and see how she would respond. My friend firmly asserted that I don’t need permission as the parent to feed my baby, and that I am the only one fully authorized to try whatever I think may work to help bring her home. So I felt strong as I arrived at the hospital and asked the nurse if I could have some alone time with Sparrow. She warmed up a bottle of breast milk for us, drew the curtains and helped untangle Sparrow’s monitors so I could hold her with ease. Then the magic happened! Sparrow latched on – to ME! I was so excited I could barely breathe. It didn’t last long, because she is still learning the coordination of sucking, but she definitely latched on and swallowed some milk for a good minute or so. She didn’t fuss or fight or gag or splutter, like she has done with the bottle and paci. She had a sweet and curious look on her face, almost like….”this feels right”. I agreed with her and praised her as she was discovering. After a few minutes she grew tired of it and I gave her break, but was so encouraged at her effort and success the FIRST time! I shared with the nurse later what had happened and she too was just as excited as I! She high-fived me and gave me a giant hug and said that was the best news any parent could ask for with a heart baby. She was totally shocked and celebrated with me. Aunt Tiffany came and got to hold Sparrow soon after, and we celebrated again. Later on in the day Mark and Uncle Nick went to see Sparrow and Mark was able to give her a bottle as well (as requested). He was able to get her to latch on for about a minute! He made a little video where you can even hear her sucking! What a wonderful day! This week we’ve hired a sitter for Noah to come in the mornings so I can try and work with Sparrow for at least 2 consistent feedings in a row. The more exposure she gets with the breast & bottle from Mom and Dad, the better, and the closer she is to coming home! I really, really, really am praying that she gets full feedings by bottle over the next couple days so I can bring her home. I also need to mention here that the Lord is so, so good and that His people have been our rocks, our support our faith even. Yesterday a girl whom I barely know dropped by with some “gifts” for Sparrow. A pack of diapers, some bibs and a super cute onesie accompanied by an envelope addressed to us. The envelope contained a check with a ridiculous money gift! I cried and cried and blessed the Lord. It just amazes me how the Jesus in people emerges, almost leaps out at you when you are in a difficult place. I have discovered that it takes being vulnerable, sharing, telling the truth about your weaknesses, your needs and then people respond with what they have to give – and I have been in complete awe at how much people want to give. so THANK YOU. I wish there was a bigger way to say it. I look forward to the day I can share all of this with Sparrow and explain that this is what the goodness of the Lord looks like.one week post-op
Hey! Just a quick update to say that everything is going great! Sparrow’s eyes are fully focusing now and there doesn’t seem to be any issue with them. PTL – for real! She still needs a lot of assistance with feedings. The nurse told us that because Sparrow’s first oral experiences were all negative ones (the ventilator, feeding tube, etc…) she is rejecting anything put into her mouth. She’s a little dramatic and gags and splutters even with my pinky finger or a tiny pacifier. Yesterday while I was holding her (something I get to do everyday now!!!!) she was rooting around and sort of sucking on her fingers. I informed the nurse and she was surprised and said that was definitely progress! My theory of course is that she smells Mommy and that ignites her instincts. Keep praying she take a full feeding from a bottle – 2 to 3 ounces – VERY soon.
Because in medicine everyone seems to have differing opinions, Mark and I feel like each new nurse is giving us completely different information. One nurse said Sparrow should get the knack of it and be home this week. Another nurse was more skeptical and said Sparrow wouldn’t learn very quickly and would have to stay 2 more weeks. Of course, being the optimist that I am, with the faith and backing I have right now am believing for the prior. Seeing her all cute and cuddly and off all her meds I hate leaving her laying in that plastic box all day. I want to hold her and kiss her and put her in the car and bring her home with me. I had my first good cry since surgery yesterday realizing that now my girl just needs her Mommy. She’s not relying on medicine anymore, but she’s just a baby that needs to be with her family. I am really going to need a lot of patience this week (or however long they plan on keeping her). Please pray for my heart & emotions. My little blonde-haired, blue-eyed beauty steals my heart every second I am with her. I am so in love with my baby girl.
cute blankets & clothes and even a little toy friend!
She has the tiniest fingers I have ever seen! xoxo
Playing with her toy with Daddy
fix my eyes
Sparrow is now officially off ALL her drips except an antibiotic and IV fluids. She needs a lot of prayer in the feeding area, as she has yet to take a bottle. Her suckling skills are not developed yet and she won’t be able to come home until she drinks milk on her own. She is still being given breast milk through the tiny tube in her nose. I am hoping to spend much more time with her this weekend (instead of an hour here and there) and try to give her a bottle myself and even breast (if they allow me to). Pray that she would take the bottle today!
She is looking more and more like a little baby as each wire, tube and chord is removed from her sweet little body. Also be praying for her lungs. She has a bit of congestion (from having the ventilator tube), and still hasn’t cried. She tries to cry but sound doesn’t really come out. Also pray for her eyes. They seem to be having a little trouble focusing. I’m trying not to worry about them, but it’s hard not to. As you can see in the video she is trying to focus on Daddy but seems to have some trouble. The Doctors are keeping an eye on this and said they’d call in a specialist in a few days if it doesn’t improve. It could just be that her eye muscles haven’t had a chance to develop because she was under sedation from day 2 of life to day 7. Now that she is off all meds, I am praying her eyes would focus and everything would be ok. Please Lord, let her eyes and her brain be ok. I have found myself singing an old song from a good friend Matty Ray called “Fix My Eyes”. I pray and sing for Sparrow the lyrics “I’m gonna fix my eyes….on YOU alone”. I tried to find a link to it, but I don’t think he has one. Otherwise, everyone has been impressed with her progress this week – doctors and nurses – which is fabulous news for us! Seriously thank you for your prayers. I feel as though I have been sitting on a cloud of hope because of all of you. There’s absolutely NOTHING easy about this, but having the peace of mind that so many people around the globe are lifting up my little Sparrow warms my heart. Every time I go to the hospital I walk past new Mom’s and Dad’s putting their new babies in the back seat filled with balloons and flowers and well-wishes and then drive them all home. As I pass each glowing pair, I say a prayer for my Sparrow and for her Homecoming to be soon. In the meantime I am keeping my head on straight, sleeping well (for now), healing great, enjoying my husband & son and staying busy with mindless things like dishes, laundry and thank you cards. I know as soon as Sparrow comes home my life is going to change drastically. I still can’t believe I am a Mother of 2! Much love,jessie
holding our baby
Last night Mark and I took turns holding our sweetness. I nuzzled and kissed her so much! It was delightful. Hopefully the monitors on her forehead & kidneys will come off today. More and More!
so much good news!
today Sparrow is
1) off the ventilator 2) had the catheter removed and is peeing in her own diaper 3) is learning how to suckle on a paci 4) is being given breast milk from a bottle 5) will be held by mommy & daddy tonight! 6) is learning to cry and use her lungs 7) is no longer on a drip sedative 8) is swaddled and having to learn to rest without sedatives, but doesn’t like her feet touched or swaddled : ) 9) is more beautiful than any living creature i have ever seen with the tape gone from her face! 10) is one day closer to coming home and being my cherub by day and night
swaddled in her own blankets
her little cheeks suffered from the tape removal, but she’s just SO gorgeous!
her set-up. trust me….this looks MUCH less complicated than 3 days ago. SO much has been removed! and a sweet hospital volunteer made the pretty name tag over her bed.
getting a visit from GB!
one week old
One week ago today I was given the most precious gift I have ever been given. She is my beauty, my prize, my love and I could not imagine my life without her.
As you know, Sparrow had open-heart surgery Friday August 20, 2010. The surgery began at 10:30 am and lasted until 5:00pm. Mark and I were able to see her off to the OR that morning and as we kissed her and told her of all the prayers being lifted up for her, we both knew the risks of what she was facing. What we were all facing. I was still suffering from a spinal headache, so after we saw her off, Mark wheeled me to a room where I could lay down. I must interject here and give this headache some credit. Most people assume a headache is just a headache….but no, not this. The anesthesiologist described it to me and said that basically my brain was “sagging” in my skull because some spinal fluid had leaked out during the block. Yea….so the word headache doesn’t give it any legitimacy what-so-ever. The only medical way to fix a spinal headache is to do a blood patch, where they take blood from another part of your body and inject it into your spine to balance out the pressure again. My anesthesiologist looked at me and said “Jessie, your middle name is Complication, so there’s NO WAY I am sticking you with another needle in your spine!”. She was right, and I knew I would just have to wait it out. Waiting it out meant, I had to lie flat on my back to ease the pain, OR drink so much caffeine that my hands would shake – because caffeine opens your blood vessels and would give my brain a little lift. : ) So, that’s what I did. Praise the Lord for espresso! Can I get an amen?
So I settled into my Family Sleep Room (for parents of children having surgery) at Levine Children’s Hospital with a double shot latte and a couple books and Mark went to the surgery waiting room. Both of Mark’s parents, and his two sisters waited with us all day, along with my Dad and several others who stopped by to pray with us. The only way to describe the day was that it was like holding my breath for 6 and a half hours. Mark and I both did well at the beginning, and as we received phone calls in the OR waiting room from the attending nurses (each report good, with everything going as planned), the day seemed to just get longer. At the 4 hour point I was in my sleep room, laying down and my heart had had enough. I didn’t want to wait anymore and I started worrying. Thankfully Mark came in as I lay there helplessly crying, thinking about my little girl’s chest being open. He comforted me and reminded me that this was saving her life and that they were at least halfway done by now. (The surgeon had told us the day before that surgery could take anywhere from 4-7 hours). It still pained me terribly to think about it and so I decided to get up and be with my Dad and Mark’s family, instead of lie there alone; headache or no headache. It was at this point that I realized the headache was at bay. I’m sure it was a combo of the pain pills I was taking, the diet coke and all the prayers, but I could sit up right without feeling the “saggy brain”. Praise the Lord. I wanted to be present and focused and in prayer for my girl and not worrying about my own ailments. Back in the waiting room we received a few more phone calls over the next 2 hours – both positive reports that all was going well and Dr. Peeler felt confident at the progress they were making. Around 4:30 pm we received a call that Sparrow was off the bypass machine and that her heart was beating on it’s own!!! During the surgery Sparrow was on a bypass machine so that could do all the work they needed to. Once we got that report we knew that the worst of the worst was over and it was a miracle that her heart was doing it’s own work after all that surgery! They still had a bit to do, and so we kept waiting. Around 5:00 pm Dr. Peeler came into the OR waiting room and he saw me sitting in the corner. He walked straight to me and shook my hand. The first thing he said was “Everything went great.” and I finally breathed for the first time all day. He went on to explain that it could not have gone any smoother and there were no alarms or surprises and he was able to do everything he needed to to get her heart functioning properly. My eyes filled with tears as he spoke and I looked around the room at Mark, his parents, and sisters and my Dad – all with eager faces and relief filling their eyes; hanging on his every word. He raised his hand to shake mine again after he finished speaking and I began crying harder. I grasped his hand with both of mine and spluttered out an almost unrecognizable “thank you thank you thank you.” In that moment, as I held his hand in mine, it struck me that that very hand had been fixing my daughter’s heart for the past 6 and a half hours. Those precious hands, had saved her life. I wanted to embrace him; the only thing that kept me from doing so was my incision. Before he left us, Dr. Peeler explained that we were by no means out of the woods. The next 48 hours would be the rockiest for Sparrow to see how her body adjusts to the new changes in her heart. She would be monitored 24/7 and there may be some scary slips and hiccups over the next week, so we should be prepared for anything. As we spoke, she was being transferred to the Cardiovascular ICU, where she will stay for many weeks. Mark and I had toured this unit a few weeks ago, so we knew what to expect already, which gave us peace. The Dr. said we’d be able to see her in about an hour. We were elated! We thanked him and as he left my Dad had us all hold hands and he said a prayer. I haven’t cried joy in a long time, but I did in that moment. I cried joy. One huge plus for Sparrow was that Dr. Peeler was able to close up her chest immediately after surgery. This is uncommon we were told because most babies swell tremendously during the long, arduous surgery, and the surgeon must wait a few days for swelling to go down before they can close the incision. This was not the case for Sparrow and the Dr. was able to close her chest immediately! The major benefit of this is that the risk of infection is much, much lower! GLORY to GOD! 48 hours later The past 48 hours have gone well for Sparrow, especially today. It’s hard to explain everything she is hooked up to and why she needs it, so I decided to update and celebrate when she gets something removed! I know so many people are praying for her and it’s important for you to have some specifics of how to pray – which I think is really important. So I will address that as well. Today Sparrow was taken off a nitricoxide gas, that she needed because the pressure in her lungs was too high and it was making her blood oxygen levels low. She was taken off of it last night and did great all day! She also had a chest tube that was draining blood from the surgery, and that was removed today as well because she has had minimal swelling and minimal blood loss over the past 48 hours! Last night the nurses gave Sparrow a tiny bit of breast milk on her lips to whet her appetite, and she liked it! Today they inserted a feeding tube and started her on the breast milk I have been pumping. They have to monitor this very carefully because she may not be getting enough blood flow to her tummy to be able to digest the milk. And if it just hangs out in her tummy it could start growing bacteria and cause some problems. So they started it slowly today and are monitoring her tummy closely to make sure it gets digested. We will know more about that tomorrow. So, you can be praying for her digestive tract and the blood flow there to be full so she can drink more of Mama’s milk! Another good report today was that she has been more alert, with her eyes open, looking around and wiggling her hands and feet a lot more. This is a very good sign! We were also told that if she does well through the night, they are going to remove her breathing tube tomorrow! YAY! The nurse explained that when we visit tomorrow Sparrow may be crying (I only heard her cry at birth), but that they want her to cry to strengthen her lungs. This may be a challenge for me, because as Mommy I want to soothe her….but I know she needs to let it out. Pray for the removal of the ventilator tomorrow and for her lungs to become strong quickly. The head nurse told me today that if Sparrow continues to progress at the rate she is progressing now, she could potentially go home in a week to 10 days! My jaw hit the floor and I instantly started crying. I was told 4-6 weeks was average post-op recovery for this sort of surgery. He explained that usually the biggest factor was feeding. That most babies have to stay a week or so longer because they have trouble with breast and or bottle. So this is a BIG prayer request: that Sparrow would take to the bottle and breast supernaturally fast! She most likely won’t be offered a bottle for a couple more days, but when she does I’ll let you know so we can all be praying. Keep praying for quick recovery in general and for Mark and I as we are traveling to and from the hospital several times a day. Pray for our health & Noah’s – as if one of us were to get sick we wouldn’t be able to visit her because of high risk of infection. I have learned to wash my hands for 2 whole minutes now; something we must do every time we see her. And 2 minutes is not short! My incision is healing up fine and the spinal headache is completely gone – as of Sunday. This whole birth experience has been a total piece of cake compared to my last experience. Mark and I know we did exactly the right thing in scheduling the c-section. Just the fact that I can walk is still blowing my mind. I can’t wait to bring my little bird home and walk her around the house – something I wasn’t able to do with baby Noah until he was about 4 months old. The Lord is good, people. All the time. Thanks again for your prayers. We love you,Jessie, Mark, Noah & Sparrow
His eye is on the Sparrow
before i got discharged from the hospital today a small army of nurses made it possible for us to hold our little bird.
