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Monday, December 21, 2015

Bittersweet Progress: A Noah AND Julia tongue tie update!

Well the biggest update I have from the last post is that our precious baby girl HAS ARRIVED!!!!!! She is 2 weeks old tomorrow,  and absolutely has been the most amazing addition to our family. She is 100% God's amazing goodness from her head to her toes. Noah loves her and though we are short on sleep, she is a sweet baby and we couldn't feel more blessed to have her in our lives. As suspected she was born with pretty much the exact same tongue tie issues as Noah, and that has been a journey in itself. I'll update on our little guy first, then fill you in on what has been going on with her thus far. To catch up on this whole story go to the October archive, and start with this blog http://www.blackplateclub.com/2015/10/even-doctors-make-mistakes-our-2-yr.html .

Noah bear: We had a rough last month with this little guy, but things are better now. Right after Thanksgiving he came down with Hand-foot-and-Mouth, which I think he caught from a play place at our local mall. Poor little guy, he was absolutely miserable... well both of us were really. I was huge pregnant, taking care of a sad little toddler, praying he would feel better soon and no one else in our family would catch HFM. This of course, led to a regression in the progress we had made with his chewing/swallowing therapy because he was in so much pain. I was upset, but felt optimistic once he started healing that if he got back into therapy ASAP that he would carry on. Then, the SLP center instructed us that he had to be out of therapy for 3 WHOLE WEEKS to prevent spreading the virus....the 4 week mark feel right when our therapist would be out of town, SO we have delayed therapy until January. I was very anxious about him missing that much therapy, but felt like maybe the Lord was providing an opportunity for us to rest from our twice a week sessions while we had a newborn. He has regressed a little more with his chewing, but is still better than he was. Also his speech is improving more and more every day, but he still has quite a ways to go with that also. I obviously do not have the one on one time like I did before to work on him with this juggling a newborn at the moment, but I'm optimistic the Lord will provide the time in the future and he will continue to progress. If I don't focus on the positives with him, then I stew in bitterness about the fact that he could have avoided all these trials and tribulations had someone been able to help us earlier on in his life.... SO I choose, optimism and JOY that he is progressing, even if it's slowly. He is talking more than he ever has, and even though it may be a differing opinion than ours most of the time haha, I'm still so grateful to hear his voice and what has been stored up in his heart all this time. Please pray we get back on track, and that he continues to make progress even in the midst of having a newborn sister around!

Now, Julia's journey: She graced us with her presence on 12.8.15, weighing 8 pounds 12 ounces, and was 20.5 inches long. She was quite the cherub and surprised us all with her her beauty rolls, even the doctor haha! As previously stated, I was pretty certain she would be born with some tie issues because they are genetic. They are along the same genetic lines as cleft palate problems, and the fact that I have them, and Noah did too I was suspecting she might as well. She also had daily hiccups in utero, which apparently is a sign as well according to Dr. Martinez. I felt much more optimistic that even if she had ties that we would be able to address them quickly, and avoid the night mare of Noah's feeding's issues that have been an issue for him for 2 long years. I also of course desperately wanted a normal nursing experience, and was hopeful this time would be different. She latched right away, but her latch was definitely not what I knew it should be. She could stick her tongue out much better than Noah could at that point, but I still wasn't convinced we were out of the woods.

Our plan goes awry: Because I used to work in the hospital I delivered in, we were very well taken care of. All of our nurses were AMAZING, and our post-partum nurse had actually just passed her lactation consultant exam. She was so very helpful, and tried everything up her sleeve to help us, but within 24 hours Julia had chewed me right up, the exact same way Noah had... So not wanting to waste time we requested to leave the hospital a day early, and head straight to see Dr. Martinez to get it all sorted out before it got worse. Then the devil appeared in the form of moderate jaundice and changed all our plans. We were scheduled to see Dr. M the day of our discharge, and our super awesome nurse did everything in her power to expedite us leaving, but ultimately we were stalled by bilirubin labs and missed our appointment with Dr. M. We had to reschedule for 2 days later, and my hormones got the best of me. I sobbed, and sobbed, and sobbed.... I had flash backs of unrelenting pain, sores, and situational depression from not being able to nurse Noah, and I was inconsolable (I primarily blame the hormones, but there might have been a bit of PTSD in there as well). I got my self together, and decided to stay hopeful, but my dreams of having a quick fix for nursing problems slowly diminished.

One mountain after another: Jaundice is stupid, and felt like a nail in the coffin for nursing for us. My son was at risk for jaundice because we had different blood types also, but nothing ever came from it. Unfortunately with Julia, hers was cause for concern and compounded our nursing problems. When my  milk came in she was too sleepy to nurse frequently and could only be aroused every 5ish hours to nurse (a side effect of the jaundice). Add not being able to nurse effectively because of her mouth, and you have a recipe for poor milk supply establishment. We also had to have blood drawn daily for 5 DAYS, which caused us to have a crazy stressful schedule. Then we were instructed to give her formula because she wasn't having enough wet/soiled diapers to clear the jaundice, and she was really limited by how much she could nurse because of her ties. If we didn't give her formula, we were being threatened with having to admit her to hospital for photo therapy... needless to say she had some pretty significant nipple confusion on top of everything and we both were quite frustrated.

Finally we get a diagnosis: The Friday after she was born we were finally able to make it into Dr. Martinez's office. Within minutes she was diagnosed with the most severe lip tie you can have, and ALSO the same anterior tongue tie Noah had. Her upper palate wasn't as bad as Noah's though, which was good news. I wasn't terribly surprised, and was ready to have it fixed. It took less than 10 minutes, and was much less traumatic than Noah's because she didn't know what was going on. She latched immediately after, and there was noticeable improvement. It was definitely worth the time, effort, and resources it took to get her seen so soon after birth... but not all was fixed immediately unfortunately.

Side note: I asked the neonatologist at the hospital to inspect Julia's mouth for lip ties to see if we could get them revised before we even went home. She looked in her mouth, and then proceeded to tell me she was completely normal... I told her about my history, and Noah's, then she basically said that nursing is painful and that I was paranoid... I could have punched her in the face (and I'm not even kind of an aggressive person)... but I didn't (of course). I promptly ended the conversation, and got her out of my room as soon as possible.  I told Dr. Martinez what she had said, and she told me to give her grace, because she didn't know what she didn't know... whatever, that doctor was insensitive to my concerns and insulted my motherly instincts. She will not be getting a recommendation from me anytime soon.

Fast forward to today: I sincerely thought the revision would fix all our problems immediately but unfortunately it has not. Progress has been slow, and seriously painful still. I'm off the hydrocodone and am slowly healing, but 2 weeks later we still aren't out of the woods. We have had to 'stretch' her lip and tongue wounds 6-8 times/day to make sure they don't reattach (which she hates of course). She nurses for literally at least 1-1.5 hours every time, and my supply is slowly being built up. I still have to teach her how to latch every time, and unfortunately am having to use my pump more than I had planned just to get pain relief. I have had a good cry almost daily out of frustration but am focusing on the fact that we are SO much farther then we ever were with Noah. I keep reminding myself that any progress is definitely something to be thankful for. I had glamorous dreams of this all being so much easier, but ultimately I think the Lord is teaching me patience, and daily reliance on Him. Which is by FAR the most important thing for any parent to focus on from day to day with little ones.  I have flash backs of Noah being underweight and hungry for the first 4 months of his life, and have to remind myself that will absolutely not be the case this time. We KNEW what the problem was this time, and are slowly moving forward. I'm optimistic we'll get there, I'm just taking it day by day at this point. I also am truly grateful to have an otherwise healthy baby, and fully realize things can always be worse.

Final Note: I wanted to give this update because I have had SO many people inquire about how my kiddos are doing, and they have been curious about how all of this works with early intervention. The one thing I continue to see is that time after time people are getting misinformation and are incredibly frustrated/confused by the differing opinions from their Pediatricians, ENTs, or dentists. If that is you, do yourself a favor and just go see Dr. Martinez. She will give you the answers you're looking for, and she doesn't push a revision if you don't want one. Trust your heart mommas, it's usually right. Regardless of whether nursing ends up being successful this time for us or not, I'm happy to know that we have fixed an issue that would not have simply gone away. She would have suffered from the same speech/chewing/swallowing problems as Noah, and knowing that we are preventing those gives me peace it was the right decision.

Will update again soon hopefully with even more progress. Hope you all have a lovely holiday and Happy New Year!!

Love, Blessings, & MERRY CHRISTMAS!!!!
The Veggie Momma